Thanks for signing the guest book, Steve. Though that’s an ongoing issue (perhaps warrior, prince, or visiting lord? 😉 — so pleased it’s helped you. Even if words don’t take away the pain at least they make us feel less isolated, and also help us understand our own experience too. Wishing you better days. ♥
Thank you so much. a so much to read.. So much information I wish ppl who don’t understand what I’m going through would take the time and read through this. Thank you! xoxo Very helpful
So lovely to read your comment Michelle, and delighted you like this site. It’s such a tricky thing as not only are so many of our individual challenges hidden but also so far removed from general experience and understanding that it adds to the complications of chronic illness and pain. Though, in spite of that, wishing you far better days, healing, strength and support. Gentle hugs x
I’m not sure where the “box at the top” is, maybe because I’m accessing this site from my phone. I’m wanting to sign up for the newsletter and the fibro flare-up kit. Are you able to add me? Or can you email me at wathamani@yahoo.com and let me know what I need to do? Thank you!
Perhaps that is why, apologies for that Crystal. I’ll see if I can fix that on the mobile site and add you to the list this instant. So hope you find the Flare-Up Tool-Kit useful. Gentle hugs x
I m suffering from RSD or CRPS for well over 15 years now, I would appreciate the information about the flare up kit please. Also even though I’m totally disabled I do charity events for many diseases and anti bullying, I am also in the entertainment business and have many close friends best selling authors, tv show hosts I have many outlets who are willing to tell our story not only nation wide but internationally, so feel free to contact me so we can get help to find a cure and monetary help to those who need it. Sincerely Jason Malone my email pdjm1@aol.com or contact me on Facebook my phone number is also on my profile.
Grand apologies, Jason, lost use of hands in this lingering setback (since Nov) so all taking eons (having to retrain dragon for new pain level etc. though sure I need not explain to you!) though *thank you* and of course I will help in any way I can. Email you as soon as princessly possible. ♥
I love what I’ve read so far on your site. I’m also using a phone to read site & don’t see where to subscribe. I’d like to subscribe & get updates. Thanks for any help.
I’ll add you too Deb, apologies for that. Trying to sort it out as noticed some of the pages are hard to access via mobile site too but delighted you love the site! Makes me so happy to read that 🙂 Wishing you wellness and far finer days. ❤ x
Very well done website. Thank you for all the useful info. I wish your site would have been at my fingertips after I fell in January 2001. I’ve learned some of these things on my own through the past 13+ years, but I certainly could have used all of your info way back then!
Thank you for your lovely comment Judy, it means so much. The amount of info back then was next to nothing and at least awareness is growing, even if us pain veterans had to do without. 😛 Glad it helps but wishing you far better days, less pain and extra gentle hugs ♥ x
I LOVE YOUR SITE♡♡♡ Thank you for all the amazing writing and awareness♡♡♡ Wish people would read more of this, recently posted your letter to people without RSD and just hurts knowing maybe, if lucky, one of my non RSD friends will read it or a family member. Love that letter! I wasn’t able to sign up and I would REALLY love to. On my phone and I can’t find where or how to do it 🙁
Thank you Leslee, loved reading your kind comment and so happy you like the site. Though agree, it’s ever so tricky conveying the reality we endure with this nasty condition, its severity, the relentless nature, and of course how it affects EVERYTHING. Sending you the gentlest of hugs and strength too. I’ll add you to the sign-up manually now. Not sure why it doesn’t appear on some mobile sites but you should receive the flare-up tool-kit and newsletter very soon. 🙂 Gentle hugs ♡ x
It’s a shame you don’t have a donate button! I’d definitely donate to this fantastic blog! I guess for now i’ll settle for bookmarking and adding your RSS feed to my Google account. I look forward to brand new updates and will talk about this site with my Facebook group. Talk soon!
Thank you so much for your amazing site and writing! This is an amazing page where I can come to read and not feel alone. I feel encouraged and accepted whenever I’m in the Tower. It’s like my dirty little secret that I don’t want to share with anyone! I’ve been chronically ill since birth and now at 31 I’m only just beginning to accept things for what they are, but whenever I’m having a bad day I put on my tiara and make my way here. If I could hug you, I would. THANK YOU <3 XOXO
You’re so welcome Kathleen, that’s such a lovely comment, thank you. ♥ I love that you wear a tiara, even just a virtual one. Also that my humble offerings help, that means a lot. You’re not alone, even though it so often feels that way. It’s an honour to be your respite, and the tower all the finer for you being in it, wearing that tiara, of course. 😉 Gentle hugs *squeeze* ♥ x
Wow! Your site is *transformed*! Really fantastic, honey! You have not been idle during these terrible winter months! (I know this is a lot of exclamation marks, but I am so impressed!) Yayyy! Go, girl! Sending loads of love your way;
Lili
Aww Lili! So lovely to read your comment. Bless you, and thank you too. Delighted you like the new look! Which is many exclamation marks too. 😉 Sending you tons of love honey. (((hug))) ♥ x
I wanted to thank you for your site! It was a photo from your page that led me down the path to your door. Synchronicity smacked me straight in the face on a Monday morning. A photo, so seemingy innocent led to a whole site about chronic pain. You see, the punchline is this…I am an endometriosis sufferer. My pain has no cure and despite years of study, very little is known about it. One person might be pain free and another completely full of pain.
I put my website as it asked. My site is not pain related and I’m definitely not fishing. I use photography as a way to cope. It is a forgiving art that doesn’t care if I have a bad day or a good day. There is always something out there when me and my body are ready.
This is a brilliant site. I often say, photography is emotion made visual (for me). So that a photo from this site brought me to the wealth of good information, even more incredible pain art and a way to feel a bit less alone, is purely magical.
Thank you, Cari, loved reading your comment. Art and photography are such powerful mediums, and made all the lovelier for what you wrote. I love that ‘is a forgiving art that doesn’t care if I have a bad day or a good day.’ That’s beautiful and so true. Creativity in all forms can be both a release from the pain, a vent for it too, as well as a comfort. It’s such a pleasure to have you here. I’ll check out your site too. As touched by your words as you are by the images. A billion welcomes! ♥ x
I have had a list of medical problems over the years so I never know if my pain is the result of something current or ongoing. I was tested twice, 20-years ago, for LUPUS and told that one result was positive and one was negative. ????? In the meantime, my current doctor says “everything is fine” even though the pain in my joints is so severe that it will actually wake me at night. I am frustrated, broke and worried that I am simply imagining my symptoms. I’m at a loss at what, if anything, I should do next. Thank you for allowing me to vent.
You are always welcome to vent Shari, sad you to hear you are going through this but hope you find a little comfort in this blog and our courageous community too. ♥ x
I read a comment the other day that got it right. ” I suffer from aloneness not loneliness.” People don’t realize the impact of their ways of dealing with a family members pain.
Hi All thank you for everything that you do, all the info is so very needed by so many of us fibro fighters and chronic pain sufferers , Gentle hugs from one princess to another lol hope u all have a blessed day xxx
Ive had CRPS for 38 years and have just come across your wonderful site. I’m learning so much and am going to give copies articles to my GP. I’m unable to get to a pain clinic. I am Reiki II trained and find it good for me. It’s great being able to “prove” that there really is something wrong with me.
Thanks Laura! So happy you do. It’s lovely to read your comment. ♥ CRPS is eeevil, and I hope with every ounce of my being, you find comfort and support here, or better yet have a remission-shaped miracle. 🙂 Until then, the neuroscience/neuroplasticity is especially important, also gentle mindful movement (aware it’s almost unthinkable), and pacing are so vital with CRPS. Wishing you continued strength and far less pain. Gentlest hug ♥ x
I cannot find the proper words to express how much I appreciate your understanding of the world we chronic pain people live in. All I can say is, this was much more than a “I know what your going through” blog. I feel as though you’ve read my journal or better yet, my mind. I have Sjogrens syndrome. A lot of people do not understand my pain, and limitations. My own family can’t even pronounce my disease, let alone understand it. For years I thought the pain and fatigue were the worst part of this disease, its really not, its the isolation. Thank you for TRULY understanding our pain, physical and emotional.
Kelly, thank you for your kind words. So touched. ♥ It means so much that it resonates for you and brings even a little comfort. The isolation goes far deeper than the physical but our whole world is lived from behind the invisible glass that is our pain and illness, with loved-ones so oblivious to the true extent and depth of the pain (on every level). I know what it is to have a family who doesn’t understand, friends too may be amazing but as they so often only see us at our best, a gap in understanding exists there also for so many with invisible illness and pain. I truly hope this blog continues to give you support and the comfort of knowing that however much physical distance there may be between us all, we’re united in our strength. Gentlest hug ♥ x
I’ve had CRPS for 5 years. Your website is great! It’s comprehensive, informative and very welcoming. I’m scheduled to see an allergy specialist as I have developed some IBS related symptoms and their technique involves neurotransmitter stimulation. Of course, I will be talking to the professionals to make sure they are familiar with CRPS as I am concerned that the technique could cause a flare up. I’ve made notations from your summaries to send to the attending technicians. The company is called Midwest Allergy Relief Center. Anyone ever heard of this technique or company?
Thank you for your kind words, Mona. So happy you enjoy this site. I too have the eeevil CRPS but soon realised the info could help many in pain. Neuro stimulation is showing a lot of promise, though unsure specifically of your treatment. There is a centre in London that uses neurostimulation based upon theories of neuroplasticity. Do tell them everything, it’s so rare for doctors to know how to treat CRPS patients. And keep us posted! Would love to hear how it goes for you. Gentle hugs x
Oh. My. Word.
You get it!!!!! I am always wandering around near tears – I NEVER feel GOOD! I am so sick of hearing myself complain! I am sick of explaining – I am sick of people not understanding the extent of my situation – they don’t understand the gravity of being ill – not for awhile – but forever – it’s never going to go away – it’s not getting better – I am sick of people making me feel guilty for having fibro – like I am doing it on purpose – I am in a very lonely place – thank you for your articles. They are spot on
Thank you, Tracie, it saddens me to hear how hard it is for you but equally, you’ve found a safe space here. The community on the Facebook page is growing rather grandly too, and filled with people who DO understand. It can be so tricky to escape the unescapable, especially when pain and sickness send your thoughts in a spin. I hope some of the techniques and tools on here offer you a little respite, and the words comfort you too. Gentlest hugs ♥ x
At last….. I have found people in the UK who understand and who live with it. For years I have felt it has just been me. Your website is inspiring and I’m truly grateful to no longer be alone. Thank you. x
I found your site searching for answers for my Nephew who is struggling so with CRPS. He had his 18th surgery tonight another one with 6 doctors coming out with no answers. We thought the spinal stimulates that were placed in his spine 2 weeks ago was the answer, have turned out not to be. He is so young, 28, living a life of so much pain. It has gotten so extreme now, his arm is swollen, discolored constant tremors, his face is swollen, rash they say is shingles, blocks every week. 3 weeks ago he was put in a coma because they couldn’t control the pain.
I struggle with the doctors that they keep going to. Everyone gets there hopes up with each new treatment but nothing they do seems to help.In fact he just gets worse and worse.
Is there a facility, a doctor, a place they can take him?
Thank you for listening,
Very concerned Aunt,
D
Diane, it breaks my heart to read about your nephew, especially to hear that the doctors are being so brutal with so many surgeries. More so as CRPS is a condition wherein any trauma (including surgery), carries great risk for increased pain and spreading of the CRPS. Personally, I always have great concerns when I hear of patients opting for, or being advised by the medical professionals they trust, to have SCS placed in their spines, as though I know it HAS helped many, when our nervous systems are so sensitised and there is so much we do not understand about this disease, a risk for greater pain is a grand risk indeed. One dear friend in Australia has huge problems since and also had it removed but equally, and more positively, another who also reacted badly is making good progress but the kindest thing you can do for him, beyond the obvious kindness your showing now, is to be there, to listen, or even not listen if he cannot talk but to just have him know he’s being supported, loved, cared for. It may sound odd but CRPS patients are as perplexed as their loved-ones are but living it; and sadly loved-ones so often distance themselves. You being there is the most loving thing you can do. As for strategies, start with visualisation from the bed, imagining movements actually has beneficial effects on the brain, which cannot tell if you are actually moving but it’s useful when in too much pain for physical therapy (it sounds so humble but consistently does work); also look up Graded Motor Imagery. Then ever so slow and gentle movements, ideally in warm water (as less painful, less alodynic pain, and easier/supported). Warm water therapy has had great results in longterm bedridden CRPS patients, truly helping them and I hope can help your nephew too; another option is hyperbaric oxygen therapy, which has helped many with CRPS (and doesn’t cause more pain beyond that of getting there and back); desensitisation techniques too; look into neuroplasticity—I’m actually writing a piece on that now (have to do bits when I can as mine is systemic), so will share that too. All of the suggestions in this post but obviously, fully aware that it’s near-impossible when in such crazy pain. However, it is all so crucial. Just ensure everything is done in the tiniest baby steps, and GENTLY. This is vital. Where are you based? If on Facebook, many support groups with info on doctors. Sorry this has taken so long, have to do it in stages as so painful/weighty on spoons. I don’t normally reply so fully but so saddened by your nephew’s situation and the doctor’s decisions. No more surgery. Agree re his doctors. An integrated approach. Also many links in this page on CRPS. Must stop, more ASAP. ♥
I have had RSD/CRPS for 21 years but was just diagnosed in July. Mine is the cold burning pain. I had no idea What was wrong with me (and I am a nurse) but knew Something was even though the doctors kept telling me it was in my head! I’m progressed so far into it and the pain and swelling so severe and the brain fog so frustrating that there isn’t a day that goes by that I don’t wish I was dead. I do believe it is starting to effect my eyes as my vision is getting worse and my right eye blurry most of the time. Anyway, you know the rest. I have pretty much every symptom including tremors and I have had 1 seizure.
Thanks for signing the guest book, Jacqueline. I hope this site offers you a little comfort and support, also that you can connect with others who live with CRPS. Sometimes even just knowing our shared experience can bring comfort, though fully aware that’s so humble and seldom enough. I too have the ‘cold’ form, actually half and half (top-half on fire, bottom-half in a freezer). It’s the cruellest of diseases but stay with us, vent if you need to, know you’re not alone. Gentle hug ♥ x
for diane, 11/20/2015
I feel SO, SO bad for him, as well as you. HE’s very lucky that YOU haven’t given up. Your post mirrored my story/pain/frustration/disbelief when my CRPS-2(causalgia) began 10 yrs ago. STAGGARING up’s n downs, had NO knowledge, TRUSTED the medical “specialists”(MY MOST FOOLISH MISTAKE), 14 surg’s (worst thing i could have done), SO MANY MISTAKES!
My only suggesttion: Listen to the people, NOT the dr’s who get paid by “how much they bring in”. CRPS patients are complicated, and my experience, $250,000 later, most of em see us as an “icd-10” (billing code), and not human beings. (more pain = more procedures=more money), and I was PREYED UPON by the “supposed” BEST in every field, for one purpose-GREED. They made it SO much worse!! If I KNEW THEN……, ya know?
Wonderful website with great help topics and resources. I am so glad you found me! lol! I will look forward to reading more of your material and self-help topics. Thank you for putting this together.
~Corrine
I just discovered you! And the tears are flowing. You articulate the journey so well. I have been struggling with purpose lately. To have you explain why it is such a challenge when one has chronic pain is so comforting. Thank you. I look forward to learning more and moving in tiny steps to achieve reasonable goals. Again, thank you for being here. You lighten the load.
So happy you did, Gloria, and thank you for your kind words. Touched, and even happier that you’ve found some comfort in these pages. Have a few tears myself reading your words (joyful ones). Moving in tiny steps to achieve reasonable goals is a wonderful strategy, a healing, and far kinder one to you and your body too. Thank you for your lovely comment. ♥ x
Thank you for inspiring me to keep trying to learn how to live despite decades of chronic pain and disability. The articles about surviving winter are wonderful. I struggle to put into words how I feel, physically as well as mentally….and you put it into words perfectly! Thank you, thank you, thank you!
Hi came among this site by luck there’s a lot of ideas and information. I have ME and fibromyalgia and endometriosis I only work 4 days as a TA in a nursery I’m struggling at the moment with exhaustion and pain a lot of people at work don’t understand my family do now but I still feel very frustrated in not being as fuctional for not been able to do things like I did before . I feel lonely and worry about work sorry for going on marlenex
Be kind to yourself, Marlene. Your challenges are already great, though I know it can be hard to, soften some of the struggle by being self-compassionate. By virtue of being here at all, you’re surviving and laden with courage too. Gentlest hugs ♥
Thank you so much for your site. I have lived with pain for 18 years now and every year it gets worse and worse. First I was diagnosed with DDD, I have had 4 knee surgeries, three CTR surgeries, the last major surgery I had was for thoracic outlet syndrome where they removed my whole first rib. That was the worst move yet. About 8 years ago I was diagnosed with RSD. Not the answer I wanted but relieved at the same time to have an answer and know what is going on. I had a great pain management dr until I moved. For a year and a half now, I have not been able to find a Dr anywhere near me that understands RSD, and doesn’t think I am just a drug seeker. Your website gives me hope!!! Any segestions on finding a new Dr would be very appreciated!
You’re so welcome, Noelle. So pleased this site and the posts resonate with you. There is always hope but it’s a joyful thing to be the bearer of it 😉 Truly hope you find relief and solutions to live well in spite of the pain. Gentle hug x
Princess, I stumbled across your website while looking for help with dark thoughts about losing my hopes and dreams to downward spiraling CFS (20+ years) and 24/7 pain (3 years). Many of your posts (and the comments of others) have spoken to my heart and lifted my spirits. At 1:56 a.m., I am also chuckling at the irony of reading your suggestions for coping with sleep problems.. Above all, I am so sad that you felt it necessary to apologize for fewer posts during your current flare. As a person with chronic pain, I understand completely and no apology is necessary. Your previous posts are still doing good while you recuperate — or at least regroup at a new normal. Gentlest hugs back at you.
Bless you, Marilyn. So pleased they resonate; it can be so isolating, even in company. Gentlest hugs to you too ? It’s been one of the hardest years yet but like you, refuse to let it stop things, slow them a little, hamper and frustrate a lot, yes (!) but know you understand, and just as my words have resonated and lifted spirits so too have yours lifted my own with your kind comment. Thank you. ?
Thank you so much for your article!!!! This pretty much sums me up right now living with a rare autoimmune disease. Really appreciated your timely words.
Thank you so much for all of this incredible information! A friend shared your article on CRPS and vitamin C with me today. I found it to be one of the most comprehensive and intelligent articles I’ve read on CRPS. I have had CRPS for 18 years. I actually spent 10 years in a wheelchair 6 of those years with open wounds on both feet that would not heal. About 6 years ago I managed to heal those wounds and get myself out of the wheelchair. Then I began doing my own research. I found I was not as much a victim to this illness as I had thought! I found there are so many things I can do to help myself through my most challenging moments. Many therapies that had failed in my early years are now my most comforting tools. For example I am now able to do water therapy which failed 16 years ago. When I first developed this condition if I got into the water it exaggerated my symptoms considerably. After about a month of water therapy my legs were swelling 2 or 3 times their normal size and my doctor made me stop.. A few years ago I moved into a new apartment and decided to try the hot tub one evening and found out when I get in the water today and actually really helps! Now when I get into the water I get the most amazing pain releif! It is as if all the pressure and pain releases allowing my muscles and nerves to finally relax. Also I found that even though it’s painful to move moving keeps the pain from growing to unimaginable levels. Again I just want to say thank you so much for the time and effort you put into sharing this information with us. Sometimes compassion is lacking not because people don’t care but because others do not have any idea how much pain we are in! It is people like you who help them to understand and find compassion for themselves and others. You are awesome and I’m very grateful! I also have a blog site with some great info … I’ll be writing an article very soon on the new Axium DRG stimulator from St. jude’s. What may be the greatest breakthrough in CRPS history! Especially for those recently affected. For someone like myself who has had this for 18 years the DRG is making an incredible difference in my ability to cop every day!. As you mentioned in your article the earlier the symptoms are addressed the more hope there is for managing and possible remission. Check out the blog site if you get a chance at kfwolfe.WordPress.com. Thank you again for everything that you share! Wishing you much love and peace on your journey! Kim
I’m in several Facebook support groups for CRPS, a disease I’ve been a victim if for 17 years since having exploratory andominal surgery. One of the members just told us about your blog, and I am so happy to find it! I am in the US, so treatments/doctors/medical expenses are a little bit different here, but I plan on reading comments and your answers as far back as you can and then all your articles! Very excited to have a new resource! Thank you for your work in behalf of all of us who suffer from CRPS.
I just wanted to thank you & all of the people who have posted about their own journey with chronic pain. Reading the posts & all the stories made me just weep! (true enough I stay in a constant state of pain & cry most of the day but to know I’m not alone, gives me hope).
I was ‘kind of’ diagnosed in 2003/2004 after my left hand went numb & tingly inexplicably one day. I’m a cardiac patient so every test under the sun was performed. Thankfully a MRI showed that at some point I had had a stroke so I now regularly see a cardiologist, however some of the best doctors had no idea what was wrong with me. After a year of tests & seeing every specialist known to man a neurologist said my symptoms sounded like RSD but because I didn’t demonstrate ALL the signs of RSD he couldn’t be 100% on the diagnosis. On a fluke he started me on Neurontin & that seemed to help so he left well enough alone & said if it worked then he would keep me on it.
He ended up leaving Dallas & going to Austin so my PCP treated my left hand for the numbness & tingling. It was SO frustrating for my hand to feel like it was constantly asleep. Sometimes (all the time) I’d just cry. I felt crazy & alone.
About four years ago the numbness turned to burning pain. The jolts of lightening would shoot through my palm then radiate to each finger. I would sometimes just scream in pain. Then my toes started to go numb. I always felt that I had hair stuck around my toes or that glass was stuck somewhere in my foot. I didn’t know my disease was spreading.
Four years later & both hands along with both feet are no longer numb or tingly, it’s PAIN. I’ve had a surgery I didn’t need & should not have had. I also take 800 mg of Neurontin 4x a day & have seen a string of doctors who have done nothing more than scratch their heads at me & make me feel like I’m the crazy one. And finally I find a neurosurgeon in Dallas who immediately says ‘This looks like Reflex Sympathy Dystrophy’. A horrible diagnosis yes but beautiful to hear when someone BELIEVES you! When someone validates you & listens!
This website provides that! Had I known the questions to ask or what kind of doctor to see then I might not have lost use of my limbs or had surgeries I didn’t need. Maybe I wouldn’t be on such a high dose of medication that doesn’t help me but hinders me. Maybe I wouldn’t have spent hours crying just wishing the pain would stop.
I thank God for each & every one of you! For being brave enough to share your story. I thank you for allowing me to share my story.
I would very much like to be a part of any newsletters support meetings or any other place that I could serve as support for someone else. I welcome anyone to contact me at krc.143@hotmail.com. I’m in Dallas but will help in whatever way I can. Alone I may not be strong enough to fight this disease everyday but with support & help I can kick this disease’s @$$!!!
Thank y’ll for letting me vent & speak freely! Thank y’ll for letting me know I’m not alone in my journey!
This site is a gift in so many ways. I have such a hard time finding the words for how I feel or what its like to live with constant pain, but this site not only speaks to and for my heart, but gives me the right words I can share with others. The writing, the look, the feel of the site are top notch. Thank you for dedicating the time and effort- Please know you are making a difference.
I have just been reading your tips on eating and preparing food when in pain . Really useful
I have become totally disabled after two failed shoulder surgeries and now lost the use of my right arm
And in extreme pain . All your information is helpful when I’m feeling so frightened and depressed
Thankyou
Hello Fellow Princess. I want to thank you for your encouraging posts on FB. I just found your page and I am excited at the encouragement that you have here. I am living with Osteoarthritis, bone on bone in both hips and bursitis in both hips. I was diagonised back in 2008, I was 50 then, I am notw 59. I am now on Disability and my life has forever changed. I continue to fight, and search for ways to bettter where I am, and l look for posts like yours to keep me going. Thank you so much, Leslie in Roanoke, VA
I have only started delving into your wonderful site, and very grateful for emotional and practical advice and sharing. Thank you.
A couple of days ago I watched a collection of short videos on peoples coping mechanisms and now I can’t find it.
Can you please help me find it again. The one I remember made me laugh was a guy talking about his skydiving attempt and calling it his “sod it day”.
Thank you again and wishing a less painful day for you, Sara
Hi I found this website quite by accident and so happy I did! Living with chronic pain for almost 13 years, I have forgotten what’s its like to love pain free…my issues are lumbar spine osteoarthritis and nerve damage…I have always been an active person and still am, but at a much slower pace: swimming, yoga, weights, and walks with my dog…but the constant battle I also face is keeping a happy smile and positive attitude all through the day because I know at night, I am exhausted….it is mostly invisible to the outsiders so it’s difficult to put it in words they understand…I wouldn’t wish this chronic s**t on anyone…but I have long ago realized this is my new normal of living….and I just take it day by day living in the moment …..
Good afternoon to everyone. I am suffering with three diagnoses, Gastroparesis, fibromyalgia, and chronic pain syndrome. A little over a year ago I had my final treatment for gastroparesis, which was having my entire stomach removed. Sadly it was not completely successful but has decreased the nausea to a point where the majority of the nausea is controlled with meds but sadly I still throw up at least once a day. Because I have no stomach the only medicine I can take has to be liquid form in order for my body to absorb it. Also because of this the doctors are not sure how to treat my fibromyalgia. I go to a pain management doctor every month and am on a butrans pain patch, liquid oxycodon, and liquid promethazine. But that still only gets my daily pain level down to a 5 or 6. Sadly when my pain gets higher and my meds can not bring it down I don’t have any other options. ER’s will not treat me and when I do end up there because the pain and nausea is out of control I get treated like a drug addict. They make me feel like I am just there to get a fix. This is so sad. I truly wish more people could understand but I just keep fighting.
For all of you going through chronic pain or other invisible illnesses I hope you find comfort and peace. I hope you all have a strong support system.
I read your post, and I just had to cry. I have had this pain since I was a little girl and I’m 67 years 0ld now. My pain has been constant for so many years, and I’ve had so many surgerys to replace joints. People think I’m OK now because as you said we tend to hide the pain just so we can fit in. My husband nor my children understand what I’m dealing with and that makes me frustrated and mad sometimes. But I just go on with what I can do and not pay attention to others around me. I feel that there are others that really understand what it is about. That alone makes me feel somewhat better. There is a lot more I could say but I will let it alone. Thank You For This Post.
Chronic pain is a storm, and depending on its severity, mood, and strength for that particular moment in time, I have learned to dance my soul because sometimes I can’t dance physically at the moment of the storm…so I have taught my soul to dance!
Wonderfully informative website. I have had rsd/crps for 23 years. I especially loved the video from Dr.Philip Gaston was very glad that you included in the website learn some new things and confirmed things I already knew. Thank you so much for taking your time and being informative for others who struggle with the pain.
Thank you! I don’t think i’ve ever needed a website more! It’s been so enlightening and soothing to read your resources, so thank you very much for all your time, dedication and energy. I recently got a diagnosis of fibromyalgia with severe allodynia and benign hypermobility, and at 17 years old there’s been a big upheaval in my life. Thank you so much for this site, and take care 🙂
I just found your site a few days ago, wish I had found it a long time ago! I suffer from chronic migraines, fibromyalgia, and rsd/crps. Just wanted to say thank you for having a place like this.
Excellent !
Had I known how complex this affliction was going to be 15 years ago and had I read your post back then I would have had a chance at a strategy. You truly know what living like this is all about and you summarize the social aspects of it very well. Your post could save a lot of grief for a lot of people if they read it early in the process.
Bless you, Chuck, thank you for your kind words, that means so much. I know exactly what you mean and indeed one reason I created the space was as it is so heartbreakingly preventable, given early treatment, and indeed the right diagnosis but it is so incredibly rare ( and that evolved into wanting help to help anyone with severe pain). I wish you could’ve read it 15 years ago. I’m actually just trying to tentatively escape what has been the hardest, and probably the longest setback, including losing the use of both hands (CRPS went wild for a while there), so forgive the ridiculously tardy reply. The love is there, as always, the sentiment too, so if you do happen to see this I’m sending you an ever so gentle hug ♥️ x x x
Wow, finally a place where others understand what it is like to be in chronic, lifelong pain. Thanks for this site, and for putting into words what so many of us feel everyday in our heads and hearts.
What a wonderful blessing to find this site! Thank you for stating the facts. I have been living with chronic low back pain, Fibromyalgia, Migraines, Spinal Stenosis, Arthritis, and Degenerative Disk Disease, etc., for 17 years now. Living with chronic pain is horrible enough, but to have Insurance companies and medical affiliates call you a liar and a “drug addict” in so many words, or, a lack there of, is disgraceful! I don’t understand what i’s going on anymore in this country. There are those in pain, and there are those who have abused the medicines we need.
Thanks again, I am subscribed!
Mareaeric Campagna
I am so glad to have found this site and I hope it is still active. Since brain surgery 6 years ago, I have suffered from painful peripheral neuropathy from my waist down. No one knows the cause, but I take Lyrica and that has lessened the pain enough that I can partially function. I can’t do much of what I used to because I can’t walk much before the pain gets worse and I can’t stand for more than around 10 minutes before it begins to get worse. I can’t sit for long periods of time, either. So I spend much of my time housebound on my back. It has been a hard adjustment because I was a very active person around my home and volunteering. Some of my family will not accept the reality of my pain and have even become angry with me when I couldn’t do what I used to. Thank goodness my husband is loving and supportive. He has picked up the load for what I can’t do. Your site has shown me that much of what I experience happens to others. Thanks so much for the time and energy you put into this site despite your own pain.
Awesome place, I love it…Thank You!!!
Thank you Patty, so lovely to read your comment and very happy you like it. ❤
I am no princess but this site has helped me understand how pain affects me and why I may act different to how I use to before pain. Steve
Thanks for signing the guest book, Steve. Though that’s an ongoing issue (perhaps warrior, prince, or visiting lord? 😉 — so pleased it’s helped you. Even if words don’t take away the pain at least they make us feel less isolated, and also help us understand our own experience too. Wishing you better days. ♥
Your site is awesome! So insightful and informative. Thank you so much!
Thank you Diane – that means so much – and you’re welcome too of course. Delighted you like it. 😀
Thank you so much. a so much to read.. So much information I wish ppl who don’t understand what I’m going through would take the time and read through this. Thank you! xoxo Very helpful
So lovely to read your comment Michelle, and delighted you like this site. It’s such a tricky thing as not only are so many of our individual challenges hidden but also so far removed from general experience and understanding that it adds to the complications of chronic illness and pain. Though, in spite of that, wishing you far better days, healing, strength and support. Gentle hugs x
I’m not sure where the “box at the top” is, maybe because I’m accessing this site from my phone. I’m wanting to sign up for the newsletter and the fibro flare-up kit. Are you able to add me? Or can you email me at wathamani@yahoo.com and let me know what I need to do? Thank you!
Perhaps that is why, apologies for that Crystal. I’ll see if I can fix that on the mobile site and add you to the list this instant. So hope you find the Flare-Up Tool-Kit useful. Gentle hugs x
I m suffering from RSD or CRPS for well over 15 years now, I would appreciate the information about the flare up kit please. Also even though I’m totally disabled I do charity events for many diseases and anti bullying, I am also in the entertainment business and have many close friends best selling authors, tv show hosts I have many outlets who are willing to tell our story not only nation wide but internationally, so feel free to contact me so we can get help to find a cure and monetary help to those who need it. Sincerely Jason Malone my email pdjm1@aol.com or contact me on Facebook my phone number is also on my profile.
Grand apologies, Jason, lost use of hands in this lingering setback (since Nov) so all taking eons (having to retrain dragon for new pain level etc. though sure I need not explain to you!) though *thank you* and of course I will help in any way I can. Email you as soon as princessly possible. ♥
I love what I’ve read so far on your site. I’m also using a phone to read site & don’t see where to subscribe. I’d like to subscribe & get updates. Thanks for any help.
I’ll add you too Deb, apologies for that. Trying to sort it out as noticed some of the pages are hard to access via mobile site too but delighted you love the site! Makes me so happy to read that 🙂 Wishing you wellness and far finer days. ❤ x
Very well done website. Thank you for all the useful info. I wish your site would have been at my fingertips after I fell in January 2001. I’ve learned some of these things on my own through the past 13+ years, but I certainly could have used all of your info way back then!
Thank you for your lovely comment Judy, it means so much. The amount of info back then was next to nothing and at least awareness is growing, even if us pain veterans had to do without. 😛 Glad it helps but wishing you far better days, less pain and extra gentle hugs ♥ x
I LOVE YOUR SITE♡♡♡ Thank you for all the amazing writing and awareness♡♡♡ Wish people would read more of this, recently posted your letter to people without RSD and just hurts knowing maybe, if lucky, one of my non RSD friends will read it or a family member. Love that letter! I wasn’t able to sign up and I would REALLY love to. On my phone and I can’t find where or how to do it 🙁
Thank you Leslee, loved reading your kind comment and so happy you like the site. Though agree, it’s ever so tricky conveying the reality we endure with this nasty condition, its severity, the relentless nature, and of course how it affects EVERYTHING. Sending you the gentlest of hugs and strength too. I’ll add you to the sign-up manually now. Not sure why it doesn’t appear on some mobile sites but you should receive the flare-up tool-kit and newsletter very soon. 🙂 Gentle hugs ♡ x
I have syringomyelia and have chronic un-explanable pain. I am happy to have found your website and will begin to browse it.
Thanks Diana, I hope you find it useful and a comfort too. Wishing you far less pain and much kinder days. ♥ x
It’s a shame you don’t have a donate button! I’d definitely donate to this fantastic blog! I guess for now i’ll settle for bookmarking and adding your RSS feed to my Google account. I look forward to brand new updates and will talk about this site with my Facebook group. Talk soon!
Thank you for all the brilliant information on her. Really glad I found you.
You’re so welcome Catherine. It’s such a joy to read your lovely comment and really glad to have you here too. 🙂 Gentle hugs ♥ x
Thank you so much for your amazing site and writing! This is an amazing page where I can come to read and not feel alone. I feel encouraged and accepted whenever I’m in the Tower. It’s like my dirty little secret that I don’t want to share with anyone! I’ve been chronically ill since birth and now at 31 I’m only just beginning to accept things for what they are, but whenever I’m having a bad day I put on my tiara and make my way here. If I could hug you, I would. THANK YOU <3 XOXO
You’re so welcome Kathleen, that’s such a lovely comment, thank you. ♥ I love that you wear a tiara, even just a virtual one. Also that my humble offerings help, that means a lot. You’re not alone, even though it so often feels that way. It’s an honour to be your respite, and the tower all the finer for you being in it, wearing that tiara, of course. 😉 Gentle hugs *squeeze* ♥ x
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Thank Goodness for your site…I absolutely LOVE it and all the great posts.
Thank you Valarie, so lovely to read your comment. 🙂
Wow! Your site is *transformed*! Really fantastic, honey! You have not been idle during these terrible winter months! (I know this is a lot of exclamation marks, but I am so impressed!) Yayyy! Go, girl! Sending loads of love your way;
Lili
Aww Lili! So lovely to read your comment. Bless you, and thank you too. Delighted you like the new look! Which is many exclamation marks too. 😉 Sending you tons of love honey. (((hug))) ♥ x
I wanted to thank you for your site! It was a photo from your page that led me down the path to your door. Synchronicity smacked me straight in the face on a Monday morning. A photo, so seemingy innocent led to a whole site about chronic pain. You see, the punchline is this…I am an endometriosis sufferer. My pain has no cure and despite years of study, very little is known about it. One person might be pain free and another completely full of pain.
I put my website as it asked. My site is not pain related and I’m definitely not fishing. I use photography as a way to cope. It is a forgiving art that doesn’t care if I have a bad day or a good day. There is always something out there when me and my body are ready.
This is a brilliant site. I often say, photography is emotion made visual (for me). So that a photo from this site brought me to the wealth of good information, even more incredible pain art and a way to feel a bit less alone, is purely magical.
A billion thank yous!
Cari
Thank you, Cari, loved reading your comment. Art and photography are such powerful mediums, and made all the lovelier for what you wrote. I love that ‘is a forgiving art that doesn’t care if I have a bad day or a good day.’ That’s beautiful and so true. Creativity in all forms can be both a release from the pain, a vent for it too, as well as a comfort. It’s such a pleasure to have you here. I’ll check out your site too. As touched by your words as you are by the images. A billion welcomes! ♥ x
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I have had a list of medical problems over the years so I never know if my pain is the result of something current or ongoing. I was tested twice, 20-years ago, for LUPUS and told that one result was positive and one was negative. ????? In the meantime, my current doctor says “everything is fine” even though the pain in my joints is so severe that it will actually wake me at night. I am frustrated, broke and worried that I am simply imagining my symptoms. I’m at a loss at what, if anything, I should do next. Thank you for allowing me to vent.
You are always welcome to vent Shari, sad you to hear you are going through this but hope you find a little comfort in this blog and our courageous community too. ♥ x
Peace and pain free day to all it is difficult having and suffering chronic pain feel free to message me
Thank you Tammy, wishing you the same and gentle hugs ♥ x
I read a comment the other day that got it right. ” I suffer from aloneness not loneliness.” People don’t realize the impact of their ways of dealing with a family members pain.
I love that. Thank you for sharing Riquel. ♥ x
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Your posts have been great support, thank you.
It’s a pleasure Linda. Thank you for your lovely comment. So pleased they help. ♥ x
Wonderful site! Great tips and encouragement. Xo
Thanks Jen! Delighted you like it. 🙂 Gentle hugs ♥ x
Exactly!!!
Still reading, keep them coming. Hugs
Still writing, more on their way. 😀 Hugs to you too Kathy. ♥ x
Hi All thank you for everything that you do, all the info is so very needed by so many of us fibro fighters and chronic pain sufferers , Gentle hugs from one princess to another lol hope u all have a blessed day xxx
You’re so welcome Geraldine. Thank you for your kind comment, it means a lot, from one princess to another. 🙂 Gentle hugs ♥ x
Ive had CRPS for 38 years and have just come across your wonderful site. I’m learning so much and am going to give copies articles to my GP. I’m unable to get to a pain clinic. I am Reiki II trained and find it good for me. It’s great being able to “prove” that there really is something wrong with me.
Thanks Chris, so pleased it’s helpful and thank you for your lovely comment, it means a lot. ♥
Great articles. You have managed to give me a resource to help others understand me better. Lots of great info.
Thanks Tiffany, it means a lot to read your lovely comment. Delighted it’s useful. ♥
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I love this site!! Very good info and very encouraging. I’m learning a lot from it. I have had CRPS for 2 years now. Thank you!!!
Thanks Laura! So happy you do. It’s lovely to read your comment. ♥ CRPS is eeevil, and I hope with every ounce of my being, you find comfort and support here, or better yet have a remission-shaped miracle. 🙂 Until then, the neuroscience/neuroplasticity is especially important, also gentle mindful movement (aware it’s almost unthinkable), and pacing are so vital with CRPS. Wishing you continued strength and far less pain. Gentlest hug ♥ x
I cannot find the proper words to express how much I appreciate your understanding of the world we chronic pain people live in. All I can say is, this was much more than a “I know what your going through” blog. I feel as though you’ve read my journal or better yet, my mind. I have Sjogrens syndrome. A lot of people do not understand my pain, and limitations. My own family can’t even pronounce my disease, let alone understand it. For years I thought the pain and fatigue were the worst part of this disease, its really not, its the isolation. Thank you for TRULY understanding our pain, physical and emotional.
Kelly, thank you for your kind words. So touched. ♥ It means so much that it resonates for you and brings even a little comfort. The isolation goes far deeper than the physical but our whole world is lived from behind the invisible glass that is our pain and illness, with loved-ones so oblivious to the true extent and depth of the pain (on every level). I know what it is to have a family who doesn’t understand, friends too may be amazing but as they so often only see us at our best, a gap in understanding exists there also for so many with invisible illness and pain. I truly hope this blog continues to give you support and the comfort of knowing that however much physical distance there may be between us all, we’re united in our strength. Gentlest hug ♥ x
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I’ve had CRPS for 5 years. Your website is great! It’s comprehensive, informative and very welcoming. I’m scheduled to see an allergy specialist as I have developed some IBS related symptoms and their technique involves neurotransmitter stimulation. Of course, I will be talking to the professionals to make sure they are familiar with CRPS as I am concerned that the technique could cause a flare up. I’ve made notations from your summaries to send to the attending technicians. The company is called Midwest Allergy Relief Center. Anyone ever heard of this technique or company?
Thanks again so very much. Mona
Thank you for your kind words, Mona. So happy you enjoy this site. I too have the eeevil CRPS but soon realised the info could help many in pain. Neuro stimulation is showing a lot of promise, though unsure specifically of your treatment. There is a centre in London that uses neurostimulation based upon theories of neuroplasticity. Do tell them everything, it’s so rare for doctors to know how to treat CRPS patients. And keep us posted! Would love to hear how it goes for you. Gentle hugs x
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Oh. My. Word.
You get it!!!!! I am always wandering around near tears – I NEVER feel GOOD! I am so sick of hearing myself complain! I am sick of explaining – I am sick of people not understanding the extent of my situation – they don’t understand the gravity of being ill – not for awhile – but forever – it’s never going to go away – it’s not getting better – I am sick of people making me feel guilty for having fibro – like I am doing it on purpose – I am in a very lonely place – thank you for your articles. They are spot on
Thank you, Tracie, it saddens me to hear how hard it is for you but equally, you’ve found a safe space here. The community on the Facebook page is growing rather grandly too, and filled with people who DO understand. It can be so tricky to escape the unescapable, especially when pain and sickness send your thoughts in a spin. I hope some of the techniques and tools on here offer you a little respite, and the words comfort you too. Gentlest hugs ♥ x
At last….. I have found people in the UK who understand and who live with it. For years I have felt it has just been me. Your website is inspiring and I’m truly grateful to no longer be alone. Thank you. x
Pleasure, Terri, and so lovely to have you here. Distance separates us but this shared experience unites us. Gentle hug ♥ x
I LOVE YOUR SITE ♥♥ Thank you for all the amazing writing and awareness of CRPS.♥♥
Thank you, Gisela ♥ So lovely to read your comment, and equally lovely to have you here. 🙂 Gentle hug ♥ x
I found your site searching for answers for my Nephew who is struggling so with CRPS. He had his 18th surgery tonight another one with 6 doctors coming out with no answers. We thought the spinal stimulates that were placed in his spine 2 weeks ago was the answer, have turned out not to be. He is so young, 28, living a life of so much pain. It has gotten so extreme now, his arm is swollen, discolored constant tremors, his face is swollen, rash they say is shingles, blocks every week. 3 weeks ago he was put in a coma because they couldn’t control the pain.
I struggle with the doctors that they keep going to. Everyone gets there hopes up with each new treatment but nothing they do seems to help.In fact he just gets worse and worse.
Is there a facility, a doctor, a place they can take him?
Thank you for listening,
Very concerned Aunt,
D
Diane, it breaks my heart to read about your nephew, especially to hear that the doctors are being so brutal with so many surgeries. More so as CRPS is a condition wherein any trauma (including surgery), carries great risk for increased pain and spreading of the CRPS. Personally, I always have great concerns when I hear of patients opting for, or being advised by the medical professionals they trust, to have SCS placed in their spines, as though I know it HAS helped many, when our nervous systems are so sensitised and there is so much we do not understand about this disease, a risk for greater pain is a grand risk indeed. One dear friend in Australia has huge problems since and also had it removed but equally, and more positively, another who also reacted badly is making good progress but the kindest thing you can do for him, beyond the obvious kindness your showing now, is to be there, to listen, or even not listen if he cannot talk but to just have him know he’s being supported, loved, cared for. It may sound odd but CRPS patients are as perplexed as their loved-ones are but living it; and sadly loved-ones so often distance themselves. You being there is the most loving thing you can do. As for strategies, start with visualisation from the bed, imagining movements actually has beneficial effects on the brain, which cannot tell if you are actually moving but it’s useful when in too much pain for physical therapy (it sounds so humble but consistently does work); also look up Graded Motor Imagery. Then ever so slow and gentle movements, ideally in warm water (as less painful, less alodynic pain, and easier/supported). Warm water therapy has had great results in longterm bedridden CRPS patients, truly helping them and I hope can help your nephew too; another option is hyperbaric oxygen therapy, which has helped many with CRPS (and doesn’t cause more pain beyond that of getting there and back); desensitisation techniques too; look into neuroplasticity—I’m actually writing a piece on that now (have to do bits when I can as mine is systemic), so will share that too. All of the suggestions in this post but obviously, fully aware that it’s near-impossible when in such crazy pain. However, it is all so crucial. Just ensure everything is done in the tiniest baby steps, and GENTLY. This is vital. Where are you based? If on Facebook, many support groups with info on doctors. Sorry this has taken so long, have to do it in stages as so painful/weighty on spoons. I don’t normally reply so fully but so saddened by your nephew’s situation and the doctor’s decisions. No more surgery. Agree re his doctors. An integrated approach. Also many links in this page on CRPS. Must stop, more ASAP. ♥
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I have had RSD/CRPS for 21 years but was just diagnosed in July. Mine is the cold burning pain. I had no idea What was wrong with me (and I am a nurse) but knew Something was even though the doctors kept telling me it was in my head! I’m progressed so far into it and the pain and swelling so severe and the brain fog so frustrating that there isn’t a day that goes by that I don’t wish I was dead. I do believe it is starting to effect my eyes as my vision is getting worse and my right eye blurry most of the time. Anyway, you know the rest. I have pretty much every symptom including tremors and I have had 1 seizure.
Thanks for signing the guest book, Jacqueline. I hope this site offers you a little comfort and support, also that you can connect with others who live with CRPS. Sometimes even just knowing our shared experience can bring comfort, though fully aware that’s so humble and seldom enough. I too have the ‘cold’ form, actually half and half (top-half on fire, bottom-half in a freezer). It’s the cruellest of diseases but stay with us, vent if you need to, know you’re not alone. Gentle hug ♥ x
My singer/songwriter sister took my CRPS Christmas song to the studio!
https://www.facebook.com/video/video.php?v=1054699641228796
for diane, 11/20/2015
I feel SO, SO bad for him, as well as you. HE’s very lucky that YOU haven’t given up. Your post mirrored my story/pain/frustration/disbelief when my CRPS-2(causalgia) began 10 yrs ago. STAGGARING up’s n downs, had NO knowledge, TRUSTED the medical “specialists”(MY MOST FOOLISH MISTAKE), 14 surg’s (worst thing i could have done), SO MANY MISTAKES!
My only suggesttion: Listen to the people, NOT the dr’s who get paid by “how much they bring in”. CRPS patients are complicated, and my experience, $250,000 later, most of em see us as an “icd-10” (billing code), and not human beings. (more pain = more procedures=more money), and I was PREYED UPON by the “supposed” BEST in every field, for one purpose-GREED. They made it SO much worse!! If I KNEW THEN……, ya know?
Wonderful website with great help topics and resources. I am so glad you found me! lol! I will look forward to reading more of your material and self-help topics. Thank you for putting this together.
~Corrine
I just discovered you! And the tears are flowing. You articulate the journey so well. I have been struggling with purpose lately. To have you explain why it is such a challenge when one has chronic pain is so comforting. Thank you. I look forward to learning more and moving in tiny steps to achieve reasonable goals. Again, thank you for being here. You lighten the load.
So happy you did, Gloria, and thank you for your kind words. Touched, and even happier that you’ve found some comfort in these pages. Have a few tears myself reading your words (joyful ones). Moving in tiny steps to achieve reasonable goals is a wonderful strategy, a healing, and far kinder one to you and your body too. Thank you for your lovely comment. ♥ x
Thank you for inspiring me to keep trying to learn how to live despite decades of chronic pain and disability. The articles about surviving winter are wonderful. I struggle to put into words how I feel, physically as well as mentally….and you put it into words perfectly! Thank you, thank you, thank you!
Hi came among this site by luck there’s a lot of ideas and information. I have ME and fibromyalgia and endometriosis I only work 4 days as a TA in a nursery I’m struggling at the moment with exhaustion and pain a lot of people at work don’t understand my family do now but I still feel very frustrated in not being as fuctional for not been able to do things like I did before . I feel lonely and worry about work sorry for going on marlenex
Be kind to yourself, Marlene. Your challenges are already great, though I know it can be hard to, soften some of the struggle by being self-compassionate. By virtue of being here at all, you’re surviving and laden with courage too. Gentlest hugs ♥
Thank you so much for your site. I have lived with pain for 18 years now and every year it gets worse and worse. First I was diagnosed with DDD, I have had 4 knee surgeries, three CTR surgeries, the last major surgery I had was for thoracic outlet syndrome where they removed my whole first rib. That was the worst move yet. About 8 years ago I was diagnosed with RSD. Not the answer I wanted but relieved at the same time to have an answer and know what is going on. I had a great pain management dr until I moved. For a year and a half now, I have not been able to find a Dr anywhere near me that understands RSD, and doesn’t think I am just a drug seeker. Your website gives me hope!!! Any segestions on finding a new Dr would be very appreciated!
You’re so welcome, Noelle. So pleased this site and the posts resonate with you. There is always hope but it’s a joyful thing to be the bearer of it 😉 Truly hope you find relief and solutions to live well in spite of the pain. Gentle hug x
Princess, I stumbled across your website while looking for help with dark thoughts about losing my hopes and dreams to downward spiraling CFS (20+ years) and 24/7 pain (3 years). Many of your posts (and the comments of others) have spoken to my heart and lifted my spirits. At 1:56 a.m., I am also chuckling at the irony of reading your suggestions for coping with sleep problems.. Above all, I am so sad that you felt it necessary to apologize for fewer posts during your current flare. As a person with chronic pain, I understand completely and no apology is necessary. Your previous posts are still doing good while you recuperate — or at least regroup at a new normal. Gentlest hugs back at you.
Bless you, Marilyn. So pleased they resonate; it can be so isolating, even in company. Gentlest hugs to you too ? It’s been one of the hardest years yet but like you, refuse to let it stop things, slow them a little, hamper and frustrate a lot, yes (!) but know you understand, and just as my words have resonated and lifted spirits so too have yours lifted my own with your kind comment. Thank you. ?
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Thank you so much for your article!!!! This pretty much sums me up right now living with a rare autoimmune disease. Really appreciated your timely words.
Thank you so much for all of this incredible information! A friend shared your article on CRPS and vitamin C with me today. I found it to be one of the most comprehensive and intelligent articles I’ve read on CRPS. I have had CRPS for 18 years. I actually spent 10 years in a wheelchair 6 of those years with open wounds on both feet that would not heal. About 6 years ago I managed to heal those wounds and get myself out of the wheelchair. Then I began doing my own research. I found I was not as much a victim to this illness as I had thought! I found there are so many things I can do to help myself through my most challenging moments. Many therapies that had failed in my early years are now my most comforting tools. For example I am now able to do water therapy which failed 16 years ago. When I first developed this condition if I got into the water it exaggerated my symptoms considerably. After about a month of water therapy my legs were swelling 2 or 3 times their normal size and my doctor made me stop.. A few years ago I moved into a new apartment and decided to try the hot tub one evening and found out when I get in the water today and actually really helps! Now when I get into the water I get the most amazing pain releif! It is as if all the pressure and pain releases allowing my muscles and nerves to finally relax. Also I found that even though it’s painful to move moving keeps the pain from growing to unimaginable levels. Again I just want to say thank you so much for the time and effort you put into sharing this information with us. Sometimes compassion is lacking not because people don’t care but because others do not have any idea how much pain we are in! It is people like you who help them to understand and find compassion for themselves and others. You are awesome and I’m very grateful! I also have a blog site with some great info … I’ll be writing an article very soon on the new Axium DRG stimulator from St. jude’s. What may be the greatest breakthrough in CRPS history! Especially for those recently affected. For someone like myself who has had this for 18 years the DRG is making an incredible difference in my ability to cop every day!. As you mentioned in your article the earlier the symptoms are addressed the more hope there is for managing and possible remission. Check out the blog site if you get a chance at kfwolfe.WordPress.com. Thank you again for everything that you share! Wishing you much love and peace on your journey! Kim
I’m in several Facebook support groups for CRPS, a disease I’ve been a victim if for 17 years since having exploratory andominal surgery. One of the members just told us about your blog, and I am so happy to find it! I am in the US, so treatments/doctors/medical expenses are a little bit different here, but I plan on reading comments and your answers as far back as you can and then all your articles! Very excited to have a new resource! Thank you for your work in behalf of all of us who suffer from CRPS.
I just wanted to thank you & all of the people who have posted about their own journey with chronic pain. Reading the posts & all the stories made me just weep! (true enough I stay in a constant state of pain & cry most of the day but to know I’m not alone, gives me hope).
I was ‘kind of’ diagnosed in 2003/2004 after my left hand went numb & tingly inexplicably one day. I’m a cardiac patient so every test under the sun was performed. Thankfully a MRI showed that at some point I had had a stroke so I now regularly see a cardiologist, however some of the best doctors had no idea what was wrong with me. After a year of tests & seeing every specialist known to man a neurologist said my symptoms sounded like RSD but because I didn’t demonstrate ALL the signs of RSD he couldn’t be 100% on the diagnosis. On a fluke he started me on Neurontin & that seemed to help so he left well enough alone & said if it worked then he would keep me on it.
He ended up leaving Dallas & going to Austin so my PCP treated my left hand for the numbness & tingling. It was SO frustrating for my hand to feel like it was constantly asleep. Sometimes (all the time) I’d just cry. I felt crazy & alone.
About four years ago the numbness turned to burning pain. The jolts of lightening would shoot through my palm then radiate to each finger. I would sometimes just scream in pain. Then my toes started to go numb. I always felt that I had hair stuck around my toes or that glass was stuck somewhere in my foot. I didn’t know my disease was spreading.
Four years later & both hands along with both feet are no longer numb or tingly, it’s PAIN. I’ve had a surgery I didn’t need & should not have had. I also take 800 mg of Neurontin 4x a day & have seen a string of doctors who have done nothing more than scratch their heads at me & make me feel like I’m the crazy one. And finally I find a neurosurgeon in Dallas who immediately says ‘This looks like Reflex Sympathy Dystrophy’. A horrible diagnosis yes but beautiful to hear when someone BELIEVES you! When someone validates you & listens!
This website provides that! Had I known the questions to ask or what kind of doctor to see then I might not have lost use of my limbs or had surgeries I didn’t need. Maybe I wouldn’t be on such a high dose of medication that doesn’t help me but hinders me. Maybe I wouldn’t have spent hours crying just wishing the pain would stop.
I thank God for each & every one of you! For being brave enough to share your story. I thank you for allowing me to share my story.
I would very much like to be a part of any newsletters support meetings or any other place that I could serve as support for someone else. I welcome anyone to contact me at krc.143@hotmail.com. I’m in Dallas but will help in whatever way I can. Alone I may not be strong enough to fight this disease everyday but with support & help I can kick this disease’s @$$!!!
Thank y’ll for letting me vent & speak freely! Thank y’ll for letting me know I’m not alone in my journey!
Kimberly
This site is a gift in so many ways. I have such a hard time finding the words for how I feel or what its like to live with constant pain, but this site not only speaks to and for my heart, but gives me the right words I can share with others. The writing, the look, the feel of the site are top notch. Thank you for dedicating the time and effort- Please know you are making a difference.
Thank you, Jada, so touched by your kind words, and more so after returning from a lingering setback. Truly means a lot, on many levels. Thank you. ❥
I have just been reading your tips on eating and preparing food when in pain . Really useful
I have become totally disabled after two failed shoulder surgeries and now lost the use of my right arm
And in extreme pain . All your information is helpful when I’m feeling so frightened and depressed
Thankyou
Hello Fellow Princess. I want to thank you for your encouraging posts on FB. I just found your page and I am excited at the encouragement that you have here. I am living with Osteoarthritis, bone on bone in both hips and bursitis in both hips. I was diagonised back in 2008, I was 50 then, I am notw 59. I am now on Disability and my life has forever changed. I continue to fight, and search for ways to bettter where I am, and l look for posts like yours to keep me going. Thank you so much, Leslie in Roanoke, VA
I have only started delving into your wonderful site, and very grateful for emotional and practical advice and sharing. Thank you.
A couple of days ago I watched a collection of short videos on peoples coping mechanisms and now I can’t find it.
Can you please help me find it again. The one I remember made me laugh was a guy talking about his skydiving attempt and calling it his “sod it day”.
Thank you again and wishing a less painful day for you, Sara
Hi I found this website quite by accident and so happy I did! Living with chronic pain for almost 13 years, I have forgotten what’s its like to love pain free…my issues are lumbar spine osteoarthritis and nerve damage…I have always been an active person and still am, but at a much slower pace: swimming, yoga, weights, and walks with my dog…but the constant battle I also face is keeping a happy smile and positive attitude all through the day because I know at night, I am exhausted….it is mostly invisible to the outsiders so it’s difficult to put it in words they understand…I wouldn’t wish this chronic s**t on anyone…but I have long ago realized this is my new normal of living….and I just take it day by day living in the moment …..
Good afternoon to everyone. I am suffering with three diagnoses, Gastroparesis, fibromyalgia, and chronic pain syndrome. A little over a year ago I had my final treatment for gastroparesis, which was having my entire stomach removed. Sadly it was not completely successful but has decreased the nausea to a point where the majority of the nausea is controlled with meds but sadly I still throw up at least once a day. Because I have no stomach the only medicine I can take has to be liquid form in order for my body to absorb it. Also because of this the doctors are not sure how to treat my fibromyalgia. I go to a pain management doctor every month and am on a butrans pain patch, liquid oxycodon, and liquid promethazine. But that still only gets my daily pain level down to a 5 or 6. Sadly when my pain gets higher and my meds can not bring it down I don’t have any other options. ER’s will not treat me and when I do end up there because the pain and nausea is out of control I get treated like a drug addict. They make me feel like I am just there to get a fix. This is so sad. I truly wish more people could understand but I just keep fighting.
For all of you going through chronic pain or other invisible illnesses I hope you find comfort and peace. I hope you all have a strong support system.
I read your post, and I just had to cry. I have had this pain since I was a little girl and I’m 67 years 0ld now. My pain has been constant for so many years, and I’ve had so many surgerys to replace joints. People think I’m OK now because as you said we tend to hide the pain just so we can fit in. My husband nor my children understand what I’m dealing with and that makes me frustrated and mad sometimes. But I just go on with what I can do and not pay attention to others around me. I feel that there are others that really understand what it is about. That alone makes me feel somewhat better. There is a lot more I could say but I will let it alone. Thank You For This Post.
Chronic pain is a storm, and depending on its severity, mood, and strength for that particular moment in time, I have learned to dance my soul because sometimes I can’t dance physically at the moment of the storm…so I have taught my soul to dance!
Wonderfully informative website. I have had rsd/crps for 23 years. I especially loved the video from Dr.Philip Gaston was very glad that you included in the website learn some new things and confirmed things I already knew. Thank you so much for taking your time and being informative for others who struggle with the pain.
Thank you! I don’t think i’ve ever needed a website more! It’s been so enlightening and soothing to read your resources, so thank you very much for all your time, dedication and energy. I recently got a diagnosis of fibromyalgia with severe allodynia and benign hypermobility, and at 17 years old there’s been a big upheaval in my life. Thank you so much for this site, and take care 🙂
I just found your site a few days ago, wish I had found it a long time ago! I suffer from chronic migraines, fibromyalgia, and rsd/crps. Just wanted to say thank you for having a place like this.
You’re so welcome, Dawn, I’m so glad it resonates with you, and thank you for your kind words and comment. 🌹 x
Excellent !
Had I known how complex this affliction was going to be 15 years ago and had I read your post back then I would have had a chance at a strategy. You truly know what living like this is all about and you summarize the social aspects of it very well. Your post could save a lot of grief for a lot of people if they read it early in the process.
Bless you, Chuck, thank you for your kind words, that means so much. I know exactly what you mean and indeed one reason I created the space was as it is so heartbreakingly preventable, given early treatment, and indeed the right diagnosis but it is so incredibly rare ( and that evolved into wanting help to help anyone with severe pain). I wish you could’ve read it 15 years ago. I’m actually just trying to tentatively escape what has been the hardest, and probably the longest setback, including losing the use of both hands (CRPS went wild for a while there), so forgive the ridiculously tardy reply. The love is there, as always, the sentiment too, so if you do happen to see this I’m sending you an ever so gentle hug ♥️ x x x
Wow, finally a place where others understand what it is like to be in chronic, lifelong pain. Thanks for this site, and for putting into words what so many of us feel everyday in our heads and hearts.
What a wonderful blessing to find this site! Thank you for stating the facts. I have been living with chronic low back pain, Fibromyalgia, Migraines, Spinal Stenosis, Arthritis, and Degenerative Disk Disease, etc., for 17 years now. Living with chronic pain is horrible enough, but to have Insurance companies and medical affiliates call you a liar and a “drug addict” in so many words, or, a lack there of, is disgraceful! I don’t understand what i’s going on anymore in this country. There are those in pain, and there are those who have abused the medicines we need.
Thanks again, I am subscribed!
Mareaeric Campagna
Thankyou for any and all guidance
I request to the person whoever has written this do not stop writing ever the readers need you.
WOW!
Just WOW!
Was just referred to your site… FABULOUS!
Thank you!
You wonderful person you are my first glimmer of hope in my very dark and despairing world.
Thank you x
I am so glad to have found this site and I hope it is still active. Since brain surgery 6 years ago, I have suffered from painful peripheral neuropathy from my waist down. No one knows the cause, but I take Lyrica and that has lessened the pain enough that I can partially function. I can’t do much of what I used to because I can’t walk much before the pain gets worse and I can’t stand for more than around 10 minutes before it begins to get worse. I can’t sit for long periods of time, either. So I spend much of my time housebound on my back. It has been a hard adjustment because I was a very active person around my home and volunteering. Some of my family will not accept the reality of my pain and have even become angry with me when I couldn’t do what I used to. Thank goodness my husband is loving and supportive. He has picked up the load for what I can’t do. Your site has shown me that much of what I experience happens to others. Thanks so much for the time and energy you put into this site despite your own pain.