Chronic pain. How do you cope?

soulfull

soulfull

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I have rhuematoid arthritis. Which people expect to be like Osteo arthritis and just affect my joints. It doesn't it affects tendons, ligaments, muscles and internal organs. Causes chronic fatigue too

I wondered how you keep going, trying to ride etc when in a lot of pain. I've been doing it for 26 years but just recently am starting to get more and more immobile by it all

I have a mobility scooter at yard which is a godsend. But still getting me down at the moment
 
Ouch! So sorry, can't help with advice. My sister used to ride in constant pain from osteoarthritis in the hip and it would be so bad she would be crying at the end sometimes :( Very luckily she has now had a double hip replacement and the pain has gone. Obviously won't be the same for you but I do have huge sympathy knowing what my sister went through. Must be awful with pain everywhere. I am pretty sure I wouldn't manage to keep going so have huge admiration for you being so brave. Hugs x x
 
Lots of tramadol, backed up with ibuprofen, paracetamol, voltarol gel and a tens machine! Oh, and several hot baths every day :)

I have severe joint hypermobility syndrome, compounded by a car accident with various auto-immune diseases on top and also Basilar Artery Syndrome so like yourself I hurt everywhere, all the time and also use a walking frame.

I keep reminding myself that I am going to hurt whether I am riding or not, so I would rather be doing something I like and hurting than just hurting doing nothing, it is still difficult but it does help.

Please feel free to PM me for moral support if required, or even a joint "s****y day" moan!
 
My boss has had rheumatoid arthritis, and has for years. I don't know the specific drugs he's on, but I know he injects himself in the tummy every couple of weeks and takes tablets daily- and these have helped, when he drops his dose it gets worse, could you increase your medication.

The main thing that has helped him is changing his diet. He has no potatoes-this has massively helped. No peppers, sweet corn etc. Tried cutting out wheat and dairy but couldn't keep it up, but it did help. I know potatoes are the big one though.
 
I am sorry you are suffering so much - its miserable.

I have Hypermobility Syndrome with numerous complications - all my joints hurt like crazy, dislocate or sublux etc and doing anything, but particularly riding is agony. I have learnt over the years to do the best I can, and admit some stuff becomes impossible, and I try and mentally put some of my pain in a "box".
Its exhausting and frustrating, but I will keep going for as long as I can.

I really feel for you. xx
 
Pain killers and more pain killers. I have a lot of back problems and some days are worse than others. I find eating well and keeping as fit as I can help. Swimming is also very good. Take care.
 
Thank you everyone. While I don't wish anyone to be in pain it's nice to know I'm not alone. I take Tramadol, paracetamol and dihydracodine daily. I can't take ibuprophen as it causes severe breathing problems :(.

I do manage to ride several days a week and usually it helps
I think I've got down this week as I did a dr test Wednesday evening and it knocked me for 6. :(:(. I tried riding Friday and well I just didn't have the strength
Yesterday was a bit better but still got tired really quickly

I have missed out on competitions over the last 5 years due to either horse lameness or more surgery for me. Now I've finally got a sound horse and my ankle doesn't need more surgery for a while and I am still struggling

I'm on several lots of mess for RA and recently had an increase so I'm hoping it will kick in soon
 
Sorry to hear this Soulfull. I too have RA alongside crohns disease so literally know your pain. (touch wood) I am relatively well at the minute, but when I am not, I can only manage the bare minimum, so you are already doing an amazing job by riding full stop.

Don't put pressure on yourself, take each day as it comes and take advantage of the "good" days xx
 
HaffiesRock said:
Sorry to hear this Soulfull. I too have RA alongside crohns disease so literally know your pain. (touch wood) I am relatively well at the minute, but when I am not, I can only manage the bare minimum, so you are already doing an amazing job by riding full stop.

Don't put pressure on yourself, take each day as it comes and take advantage of the "good" days xx
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Glad your doing relatively ok ATM

It is that I think I should do it. I WANT TOO and feel gutted that I can't

Then sometimes when I do make it to a show I'm so worn out from getting there I don't ride as well so obviously it shows and we don't get placed as well as what I know we 'could' and again I want a better place lol
 
soulfull said:
Glad your doing relatively ok ATM

It is that I think I should do it. I WANT TOO and feel gutted that I can't

Then sometimes when I do make it to a show I'm so worn out from getting there I don't ride as well so obviously it shows and we don't get placed as well as what I know we 'could' and again I want a better place lol
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The frustration when this happens is huge, Isn't it? Just try and keep telling yourself how well you are doing by managing to get there and ride with all your problems and try not let it spoil your time with your horse.

I know it isn't easy, I'm having a confidence crisis myself just now as I am the only disabled rider in a stage 1 group lesson and struggling to do everything the other riders are doing to the same level and feeling very inadequate as a result.

I just have to keep telling myself that at least I can still ride.

It is difficult though, having to lower your dreams and aims/expectations.
 
so sorry to read this. i consider myself sooooo lucky that I although I has Degenerative Disc Disease and joint hyper mobitility, a lot of the time I am pain free (although I have set limits to what I can do now). I have had to accept over the last two years that jumping and fast work are no - no's. I have to use matrix cages to support my ankles, and I simply cannot get on to my pony without a mounting block any more.

Shy had a bucking fit (excitement) yesterday, and I am really struggling today. Hubs had to do the grafting for me, makes me so sad.The tramadol is out, and when I'm bad, I used to take diclofenic - now replaced with nuroxen.

I'm not much use, other than I feel your pain x
 
Sprout said:
I am sorry you are suffering so much - its miserable.

I have Hypermobility Syndrome with numerous complications - all my joints hurt like crazy, dislocate or sublux etc and doing anything, but particularly riding is agony. I have learnt over the years to do the best I can, and admit some stuff becomes impossible, and I try and mentally put some of my pain in a "box".
Its exhausting and frustrating, but I will keep going for as long as I can.

I really feel for you. xx
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I have HMS too and have found Pilates is the key, if you make sure your core is strong and the muscles around the joints are secure you will find the pain vastly reduced!
 
Sprout said:
I am sorry you are suffering so much - its miserable.

I have Hypermobility Syndrome with numerous complications - all my joints hurt like crazy, dislocate or sublux etc and doing anything, but particularly riding is agony. I have learnt over the years to do the best I can, and admit some stuff becomes impossible, and I try and mentally put some of my pain in a "box".
Its exhausting and frustrating, but I will keep going for as long as I can.

I really feel for you. xx
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Agree with the "Pain box" it's what helps me cope. I have Hypermobility too and have a lot of pain in my hips, knees, ankles and wrists. I've never had a full dislocation but my hips and elbows do sublax quite a lot. When my hips do that riding it's hurts like hell.

I take paracetamol, ibuphen when my asthma isn't playing up. Diclofenic but my doctors don't like me taking it more than three/four days at a time as it can cause heart problems. I'm allergic to naproxen so that's my lot at the mo.

I'm looking for some wrist supports I can do horses in as they are getting worse and starting to sublax.


Try to make your self a place in your mind where nothing hurts. You aren't tired etc and just spend 10/15minutes twice a day laying down and go into that place. I find that helps me cope a bit more.

Hugs.
Xx
 
Sorry to hear you are in pain it is very distressing when you cannot do the things you want to. I find tramadol, ibuprofen and paracetamol help but not much. I dont do too well when I get cold but get really hot when wrapped up so get chilled when I remove layers all of which makes the pain worse. So hot baths are my friend also lying on top of a duvet to sleep as the insomnia is the biggest problem for me if I lie on top of a feather duvet with a light one or blanket over me I find the body heat and comfort makes it possible for me to be pain free for a few minutes when I wake up. I then dont want to move but it doesnt last and I get stiff
 
So many of us with JHS !! Ankle supports have been brilliant, as I am always spraining them. I have to buy boots now that specifically support ankles. I was also told to use specialist insoles by the consultant to correct my foot arch, and that has helped.

Tubigrip is good for wrists if that helps.
 
Oh god, you too ! That's just it, I never learn either. because I think everything is "supple" i don't feel the pain until the day after. And when I go hypomanic, god help me - though i don't feel the pain and exhaustion till I've come down a bit.

If I were a horse, i would have been put down a long time ago.
 
Agree about the automatic cars, and good knee braces help as well to prevent knees dislocating. I have the ones with the metal bar on the side (outside of leg only) and they make a huge difference.
 
LessThanPerfect said:
Check that it is one that allows some movement in your wrist as some of the wrist ones have rigid supports inside so you can't move your hands and wrists properly for riding or driving.
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Thanks, from what I can see they don't have the metal support carpel tunnel supports do but need to just make sure.
 
Do you know what - I asked my (senior) physio about ankle support/braces, and she'd didn't want to comment on them, or suggest using them - we were quite shocked tbh. Using various things from ebay to good effect now.
 
So sorry to hear your in pain a lot op. It's not nice!

Its nice to hear others having joint hyper mobility (well not nice for you but not come across anyone else havin it) I have jhs and dislocate my knees, I've gone a year the other day without popping my knee out of place but following a 10 mile sponsored ride last Sunday and a lot of canter work in a forward seat I'm now suffering and lame!

I find the only things keeping me going is my chiropractor and when my legs are having really bad days not doing anything at all if I have nothing on. Am dreading the day I dislocate something again.
 
I'm not really best placed to write on this thread as I don't think I'm as bad as most of you, but I have spent three years in terrible pain from a back injury. I'm lucky now that certain things I can do with minimal pain, running, riding, pole dancing, cycling...even horseback archery today! The things I can't do is sitting or standing still, more than 20 mins in a chair or stationary and it starts hitting my nerves til I'm in tears. So I'm lucky in that I can keep active but my day job and the 9hr flight I'm facing are absolutely awful. I keep myself as fit as possible even when it's tough and as flexible as possible and I seem to cope best that way. I try to use mental pain control as i had to take so many painkillers for the first 2 years I got ulcers. So I picture myself running or riding, eating up the miles, and try to control my breathing.

What it has done is make me aware of how fragile things can be. I refuse to waste one minute to giving in to it, I won't let it spoil my life, so even at its most excruciating I would ride and rock climb and do silks because to my mind it was going to hurt even if I wasn't riding or running or climbing, so I might as well be in pain doing something fun!
 
Shysmum said:
Do you know what - I asked my (senior) physio about ankle support/braces, and she'd didn't want to comment on them, or suggest using them - we were quite shocked tbh. Using various things from ebay to good effect now.
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This is generally because using braces makes the joint less stable as the muscles no longer have to work. So unless you have a break etc then this will make your joints worse! Instead exercises should be done religiously to strengthen the joints instead.
 
I hardly dare suggest this but look at Facebook 'Turmeric Users Group' page, it appears to be the new wonder for all sorts of pain related ailments it might just help some of you?
 
shortstuff99 said:
This is generally because using braces makes the joint less stable as the muscles no longer have to work. So unless you have a break etc then this will make your joints worse! Instead exercises should be done religiously to strengthen the joints instead.
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Yes, I agree that you wouldn't want to use braces continuously. But if you just use them when riding they do help prevent joint dislocation. Plus, if you can't bear weight on your legs some leg exercises are contra-indicated.
 
Some of you really sound like you are going through a hell of a lot. I suppose pain is relative and I am gratefull that whilst walking is a bit of a nightmare , once I am on my horse I am fine. I just have to figure how to do the tesco shopping run on horse .
 
LessThanPerfect said:
Yes, I agree that you wouldn't want to use braces continuously. But if you just use them when riding they do help prevent joint dislocation. Plus, if you can't bear weight on your legs some leg exercises are contra-indicated.
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this is basically what i want them for, hanging up hay nets is now getting to be interesting to see what sulaxs first. Wrists or elbows and the both hurt like hell when they do.
in a big believer in not relying on things but sometimes i would just like the comfort of the support there and not worry about sulaxtion.

in not able to do alot of things like Pilates as my phyiso did a session with me and my hips nearly popped out. When i can afford a few sessions at a.time we will be looking at other strengthening exercises.
 
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