In complicated pain conditions there are two kinds of pain: bearable and unbearable. Most of the time it is the latter. This can be incredibly hard for loved one to comprehend. There are no breaks or moments of respite in CRPS. None. The pain is constant, swiftly making you forget what pain-free or comfortable ever felt like.
Fibromyalgia can also be vicious, though it tends to ebb and flow a little more than the constant burning and freezing of CRPS, it can be exhausting, the brain fog embarrassing and frustrating too, but no matter which pain condition you or your loved-one lives with, the pain is real and struggles are very real too.
Though without direct experience it may be too tricky to understand, as with everything we haven’t experiences ourselves, it is vital (sadly not commonplace), that loved-ones do not add to burdens of a live unlived — and a body that betrays with pain and limitations — by believing their loved-one’s pain.
Most people will have experienced the pain of injury or acute illness, but the condition will have settled and the pain disappears. Chronic pain is different as it does not go away, creating a feeling of frustration and helplessness.
Chronic pain doesn’t just affect the sufferer, it makes dramatic changes for those around them too. Family, friends and work colleagues may react in unexpected ways, sometimes kindly, other times with hurtful disbelief but every relationship is altered one way or another. Especially for loved ones who are suddenly caregivers.
Fighting pain takes everything you have in you to just get through the day and sometime, the pain patient may be struggling so hard just to cope with the constant onslaught of pain that they do not see the stress they are inflicting on others. Of course this is exacerbated when those they love do not learn about chronic pain and their specific illness, which only serves to make the ain experience even worse.
This is when learning how to be both a carer and taking care of yourself too, while helping the patient, is most important and support is needed. No one wants to be a burden on anyone else. No one wants to be irritable all the time. Try to put yourself in their place. If they could change things they certainly would.
Helping them help themselves while maintaining your own life balance is the key. In this section we will look at not only how you can help but also coping stratagies for carers and those close to the chronic pain sufferer.
At present medical science does not have any clear answers for chronic pain and many different treatments may be trialled before a positive result is found. Often the cause of chronic pain cannot be found using current medical technology and this adds to the frustrations and leads to the question whether the pain is real or not.
Questioning the pain is particularly hurtful to the person who is in pain and can damage the relationship between carer and sufferer.
Caring for someone who lives with severe chronic pain can prove difficult and frustrating and the pain can be frightening, not only for the person experiencing it, but also for people close to them.
Although I created this website to help as many in pain as princessly possible, having CRPS and fibromyalgia myself naturally means those are the two pain conditions I can speak about with the insight of first-hand experience but I hope that the offerings found herein can help everyone who lives with chronic pain.
When I started The Princess in the Tower a father contacted me who was desperate to find anything, anything at all that might stop his son from screaming because of the constant intensity of CRPS. I wanted to say that it gets better but perhaps it is only we who get better at dealing with it.
We don’t wish to spend our lives squirming or screaming and somehow, though we never truly are used to it, we quieten. Our dreams too lower their voices as we resign ourselves to never again knowing what it is to feel comfortable or pain-free.
Just as the sufferer of chronic pain has to learn to live with their situation, so too does their carer, and strategies need to be in place to create the best quality of life under the circumstances.
These strategies will be different for each individual or circumstance but there are basic rules that can help:
- When a patient goes for medical consultations and physical therapies, ask if you may go with them and learn what is being done and what results can be expected.
- Learn all you can about the medicines the person you are caring for is taking so that you can be aware of side effects and what the medicines are for so that you can help them manage wisely. Keep a list of medicines to take to the doctor, clinic or hospital.
- Learn all you can about ‘chronic pain’ so that you have a greater understanding of what the chronic pain sufferer is going through. This is vital for the welfare of both you and the person in pain.
- Learn managing strategies from pain management clinics, books, support groups and links such as this web site (and our facebook page).
- Learn to balance what you do for your partner and what they need to do for themselves (see below for help in balancing your care responsibilities).
- Encourage the patient to be as physically and mentally active as is possible, always being aware of their limits.
- Say what you are thinking, don’t let gestures speak for you.
- Show appreciation when the patient does something for themselves or takes the initiative, this is good for their self-esteem.
- Accept that feelings of anger and guilt are normal under these circumstances and try to not to mirror any of your partner’s negative emotions. It would be better to direct them to this website so they can learn how to help themselves, see the Pain Management page for more information on helping negative thinking.
- Look for fun activities that you both can do but always remember to look after yourself too.
- Take ‘time-out’ for yourself, caring for someone with chronic pain can be exhausting and you will need times to recharge.
Care For Carers
UK carers can call Carers Direct on 0808 802 0202 Free, confidential information and advice for carers. Lines are open 9am to 8pm Monday to Friday (except bank holidays), 11am to 4pm at weekends. Calls are free from UK landlines and mobiles or you can request a free call back. You can also ask for a call back in one of more than 170 languages including:
ربي, বাংলা, 中文, Français, ગુજરાતી, Polski, Português,ਪੰਜਾਬੀ, Soomaali, Español, Türkçe and .اردو.
You can talk to an adviser live online or send a query by email.
Find out more about the Carers Direct helpline here. They’re website is very useful for everyone who cares for another in severe chronic pain and variable illness, visit them here.
Scotland has a fantastic carers’ website; for the right info on how to get a helping hand for yourself or someone you care for, call or go online: 08456 001 001www.careinfoscotland.co.uk Lines open Mon-Fri, 10am-8pm and Sat, 10am-4pm
Carers Australia puts you in touch with other carers as well as the National Carer Counselling Program: Free call 1800 242 636 www.carersaustralia.com.au
Sign-up and receive a free flare-up toolkit and regular posts and tips on living – and coping – with severe pain and chronic illness ♥
[avatar user=”jomalby” size=”thumbnail” link=”www.princessinthetower.org” target=”_blank”] Gentle hugs x[/avatar]
How do we sign up?
Thank you for this site!! I’m dealing with Fibro and CFS and it’s been such a challenge, as you obviously know. Lots of great info here. Thank you!!
You’re most welcome Crystal 🙂 Add your name and email to the box at the top for the sign-up, be lovely to have you join us. ♥ So happy to hear you like it, adding more info as often as possible too. Thanks for your lovely comment. ♥
I haven’t been receiving any updates by email…is that normal? Love this site and after 9 years of having RSD my husband and I were recently in a car accident which activated my RSD and now I have widespread fibromyalgia! What meds seem to work best for most people? I am trying different things but wondered if there was a way of fast tracking?
Thanks again for all you do!! Chris
Hi Chris, I’m actually in the process of organising a monthly newsletter and mini updates too so you should find an email in your inbox very shortly. Did you receive the Flare-Up tool-kit in the welcome email? I hope so, it was a labour of love 😉 I think it’s so SO hard knowing that so many are in as much pain as I am and it’s the first of many offerings to lessen both burden and pain for fellow warriors, angels and princesses. I too have RSD and fibro, not the finest of combos! But do reach out if you need to. The accident would certainly flare everything up, so sorry to hear about that. Take extra vitamin C after any trauma, as this has been found to lessen the chance of spreading. I also use a SCENAR machine, which I’ve found to be quite successful at speeding up general pains, perhaps even lessen spreading too. Even with our shared situation, there’s hope and determined to find it for us and all else who live with such a beast of a condition [or two]. Gentle hugs x
Thanks so much for your reply, I just got an email update and I was so encouraged! You are an inspiration and I will continue to look for those newsletters also. I did get the flare up tool kit 🙂 today I’m having a very down day as my antidepressant medication is being changed so as I’m being weaned off one and waiting for the other to kick in…it’s such a difficult balance! I’m very blessed to have a supportive husband who does his absolute best to try and understand and my faith in God helps me above all else…thanks again!!!
Really feel for you right now Chris, it’s so awful having to switch meds. Hope you are coping OK and through it so swiftly and out the other side that all this current discomfort and upsetting emotions pass and fast. So happy you receive the tool-kit. I sent out an update and will follow very soon with exclusive tips. I wanted to offer those kind enough to support this endeavour with lots of extra bonuses and loveliness too. I know it’s the hardest thing in the world but know that you are strong by virtue of being here at all. I wish your burden to be lightened and pain replaced with joy. Sending hugs <3 x x x
I find that the care and attention to need gets less and more invisible as time evolves. Family & friends get tired of seeing and hearing…so we keep our mouths shut and lay in distress
Most definitely agree Cyndy. It’s a sad fact but a true one. However, the communities online and support groups too make it a better time than ever to still be able to reach out. I know it isn’t the same as in-person connection but lovely non-the-less. Much love to you and gentle hugs ♥
My family has been in complete disarray since my diagnoses. They have a very difficult time accepting my diagnoses and dealing with me when I’m a “zombie” on my medication. They say I should have listened to them and not had the original surgery that caused CRPS. They tend to adopt every belief of my sister’s. To give you an example of how she is, when I had my SCS implanted (which was one the most painful feelings ever dealt with) she never called me or anyone in my family to ask how I was. She claims it makes HER so mad that I have CRPS (due to me not listening to her) that she can’t talk about it. This has torn my family apart. This is the 2nd Thanksgiving me, my husband and my 5 year old little girl were not invited to celebrate with them. We weren’t invited last Thanksgiving or Christmas. To add to the drama my husband had to have his L5 and S1 rebuilt and fused. He also had to take medication which only fueled the “zombie affect!” My sister is extremely dogmatic and prejudice. She claims she doesn’t want her children to be around our explosive tempers. The only time we explode is when we are judged because of the pain we are experiencing. As of now we do not communicate with them because of their choices and how they treat my one and only daughter. I have sent endless reading material, told them exactly how I feel, worked with a counselor and ignored their snide comments. I do not know what else I can do or say! We used to be so close and in a time I need them most they turn on me! How am I to deal with this situation?
As a carer, I find this the best advice:
Take ‘time-out’ for yourself, caring for someone with chronic pain can be exhausting and you will need times to recharge.
In my country, carers sadly get mislabeled or misjudged for just trying to look out for themselves. I still beat myself up about it sometimes.
I just try to remember that self-care isn’t selfish; some people just don’t understand because they haven’t been in my shoes. The same goes for those who experience chronic pain – it’s hard to understand if you haven’t been in their shoes as well.
I know this is an old blog but I’d still like to say thank you for articulating your thoughts and sharing.