Chronic Pain..how do you cope?!

[peachcherries]

Title says it all really! How do you cope whilst in pain?
Right now my pain levels are really high.
I have several autoimmune diseases and Fibromyalgia (which I fail to accept) which are mostly well managed but the last few months I've pain in most joints and muscles.
Zapain isn't cutting it this morning and it's all getting me down.

Anyone?

I have chrondomalacia patella and HATS, so a lot of similar symptoms to fibromyalgia, I currently get prescribed codeine and use pressure/support wraps, mainly on my knees, simply having pressure around the joint helps me a lot. I also get corticosteroid injections into my knees once a year, they help massively but only last 4/5 months and I believe there's a limit on how many times you can have them as they can cause damage to the joint, you have to avoid using the joint as much as possible during the first 48 hours which can be tricky if you have a busy schedule or young children plus the injection itself hurts and it's slightly uncomfortable for a few days afterwards, but I'd still recommend it, a week of discomfort for reduced pain for the following 5 months is worth it for me.

I've a connective tissue disorder where all my joints dislocate frequently and honestly over the last decade, I've just gotten used to the pain. It's always there and it's not going anywhere and it's just part of my daily life now to hurt.

A lot of it comes down to acceptance unfortunately. I do have bad days where it's unbearable and I use a combination of rest, pain meds, heat and pressure gloves. I get pain every day and I found it difficult to adjust to at first but I've got to the point where I don't even remember not being in pain any more.

I have fibromyalgia - diagnosed 20 years ago (fortunately I lived near one of the first FM specialists to be able to diagnose it).

I have found that painkillers, while they deal moderately with symptoms, do little else other than load your system up with an additional burden. What has worked is exercise: very, very gentle exercise, walking short distances at first. I have built this up to a fast walk, never a run, or I slide back.

Honestly, at first, it was awful. I didn't feel I had the strength or stamina to get off the sofa. But I realised I had to when my practitioner pointed out that I was in a spiral. So I got up, walked - just one block at first - and then did it the next day, and the next, and the next. It's the only thing that works, and it's something I constantly have to remind myself of. The mind, after all, is one of the biggest obstacles of all with fibro, as you yourself have admitted.

The only other thing that worked, medicinally, was marijuana (not hybridised; just your common-or-garden variety), which wasn't an issue in the country where I used to live. Obviously, I cannot use that now.

My understanding is painkillers as such don't touch it. 'Nerve settlers' do- they dampen the nervous response, so it helps what I call the jangling pain. I take amitriptyline.

For me, it's about avoiding triggers- tiredness, stress, over exercise, under exercise... basically treat myself like a baby/toddler that needs to be kept on an even keel!

Lots of self soothing behaviour- rugs, hot water bottles, hot chocolate, hot bubbly baths (when I can manage them).

I use things like magnesium spray, too.

For me, it's about avoiding triggers- tiredness, stress, over exercise, under exercise

Totally agree with you. Late nights are particularly punishing. When will I ever learn?!

Unfortunately amitriptyline spaced me out so much I had to stop after two days. I couldn't function! Nor could I take the propanolol prescribed because I have a history of asthma.

I have Psoriatic Arthritis, Osteo Arthritis and Fibromyalgia and I’m currently being weaned off slow release Morphine as it’s a waste of time and doesn’t even touch the sides.

I’ve been referred to Pain Management so I’m hoping that they can give me some coping strategies as painkillers are a waste of time for me.

I hope you get sorted, it’s rubbish being in pain

Zapain isn't cutting it this morning and it's all getting me down.

I've got severe Rheumatoid Arthritis which isn't under control at the moment and have taken Zapain like Smarties today. Since 5am, I've taken 5 and it's not touching it today.

The most I'm doing is to try and keep my head busy with work, which isn't going too well. Most of my afternoon is meetings, so that should be a useful distraction.

I'm not touching anymore Zapain till this afternoon, as I can certainly feel I've taken a few this morning. I'm currently working on a clients live database and having to treble check everything I'm about to run, just to make sure I don't delete anything.

I manage mine by using heat/cold packs, pain killers, anti inflammatory gels, soak in the bath (if safe to get in/out), pacing myself, trying to avoid stress. I walk when ever I can and do some some simple yoga. But, some days it’s just utter crap. I have rheumatoid arthritis, osteo arthritis and discoid lupus.

meds (i take gabapentin) for the nerve pain, ibuprofen for the flares.. knowing my triggers, knowing my limits, rest days... and just learning to cope with it basically.

I will always be in some level of pain, i don't remember what it was like NOT to be in pain, i just get on with it best i can, and don't beat myself up if i'm having a bad day, i listen to my body and i rest best i can.

Yes, late nights! Working in the evening, it's a killer!

Thank you all for taking the time to comment.
Some great suggestions which I will definitely put into practice.
I don't have anyone around me who has chronic illness or pain, so I guess part of my issue is I try and keep up the pace. I feel I need to do this so I don't feel inferior.

Has anyone found cutting any certain food types out help?

I have EDS, Arthritis and Ulcerative Colitis. Some day’s Tramadol will work, other days (if hip dislocated) it touches nothing. I spent Sunday stuck half on and half of the sofa crying. Today I have been out. However I also have a GP appointment today and may have to get stronger meds.

I have osteoarthritis and fibromyalgia among other things. Perhaps this will sound odd, but I accept that I have them, and I don't 'suffer' from them. I mean, it's horrible, but as long as I can just accept and not 'fuss' in my own head, then I can keep going. Not sure that quite communicates what I want it to...

However I am extremely lucky is that I no longer have to work, can take housework as lightly as I wish (no one else cares !), and if I choose to spend hours resting, then that's not a problem.

And yes, like a pp walking is hugely important- even if it's just round the block!

Meds aside: distraction, adjusting own expectations and managing those of others (exhausting in itself), daydreaming (underrated), sleeping.

I've had severe chronic pain for approx sixteen years now, since the age of seventeen. Pelvic.

TBH the only thing that has ever helped has been painkillers, strong ones. I was under the pain clinic for several years working up a ladder of different surgeries, interventions, medications and procedures to try and find the least extreme option that would provide some relief.

Eventually my treatment plan ended up being 100mg of morphine per day, antibiotics post-coital (I get UTIs every single time I have sex otherwise), drinking a lot of water. That's it. Still in a lot of pain daily but it's actually manageable. Prior to being on any pain relief my life was a bit of a mess, so much time off work and almost losing jobs, relationships badly affected. Now it's much better. I have to deal with the side effects of being on such a high dose of morphine on a day to day basis but the side effects are less of an impediment to my life than uncontrolled, constant extreme pain.

It's a balancing act with chronic pain, always. Trying to find the thing that works that doesn't also wreck you life. Other meds worked better (buprenorphine, ketamine, nabilone) but the effects of those was so horrible it was impossible to go to work so just not an option for me.

You should get a referral to the pain clinic if you haven't already and be steadfast that you need proper treatment. I can't tell you the number of times I was fobbed off because the issue causing the pain wasn't always visible. Treated as a drug seeker, as being hysterical because I was a young female.

Badly I think is how I cope!! I have a raft of msk issues, potentially EDS and I think I’ve torn a rotator cuff. Walking helps, heat, cocodamol and also resting when I can (although too much rest makes it all worse!) I love a very hot Epsom salt bath to ease the various painful bits!!

Peach, when you say you refuse to accept the fibromyalgia, is that emotionally or medically? Do you believe there is another underlying condition that needs to be addressed and that Fibro is a fob off diagnosis?

I find myself drawn to various other diagnoses, in the hope that something (B shots, HRT etc) will help.

The periods of high stress and injury I'd had does lend credence to a Fibro diagnosis, unfortunately.

Accepting it doesn't mean accepting the restricted lifestyle and pain, it means working within your capacity and tolerance in order to reduce the pain and restrictions.

I have hypothyroidism which causes joint pain, and chronic fatigue which doesn't help when in pain. And 2 ruptured discs, compressed nerve, sacroilitis and a whole bunch of undiagnosed pain-causing problems. I take Etoricoxib (anti-inflammatory), zapain, tramadol, amitryptiline. I couldn't live without my tens machine (12 quid from lloyds pharmacy but priceless). I listen to my body, use heat/cold if needed and don't over do it.

Gentle walking on flat surfaces helps (pavements are shit around here, I wander around cemeteries for the only flat paths!) I balance movement and rest and try to distract myself when it's too bad to do anything else. I never sit in pain quietly, I watch youtube to distract me.

I also do as much as I can to still appreciate myself and my body. Sometimes I feel so useless and fed up, but appreciating my body when it's working well (even if it's just one painless body part!) really helps. Self care routines too- I look after my skin and spend lots of time doing what I can to look after myself.

I am 71 and have had fibromyalgia since i was 16 yrs old. The symptoms had been fairly minor up until about 15 years ago when all hell broke loose with a lot of pain and fatigue but I continued working full time and attending the gym. I put a lot of time into studying the illness and was determined to bet fibro but of course there is no cure. I'm in a really good place now with very little pain. The following helped me.

1. Have a determination that the illness lives with you BUT you make the rules. That pain or fatigue won't stop you from doing what you want.
2. Keep your weight down
3. I attend various aerobic classes for 8 hours a week, thats 6 days a week. Yep, the movements hurt and I drag my sorry arse away from the class but within minutes of leaving the class i feel so much better.
4. Epsom salt baths, say weekly.
5. A vegtarian diet and no/little processed food.
6. Keep warm.

I believe the biggest factor has been all the exercise that I do but it didn't happen overnight. I don't take any medication although i was on gabapentin for a few months but it turned me into a mad woman. Ie i couldn't walk straight, slurred words, in a daze. I am not a medical person in any way, shape or form. I decided that if fibro was going to live with me I had to take charge and fibro was going to have to sit on the back burner while I lived my life.

Distraction, light massages and I carry on moving however much pain I’m in. When I walk and every step is painful I joke to DH I’m having a Little Mermaid day. You know how she sold her tail to get legs but every step is pain.

The days where I have not moved because I really can’t it all gets much worse.

Little mermaid day! I love that!

I wish I could be as stoic as some of you. I got stuck again yesterday, made me Yelp whenever I tried to stand (was on the loo). I’m fed up, the doc says increase the Tramadol, but I have severe UC and am waiting for bowel removal. Feeling weepy and can’t win today and have nobody to talk to. I always tell everyone I’m fine!