Is this my lot till I die ?

Gillyb

I have osteoarthritis in my feet knees hip hands shoulders as well as S1L5 +4 trouble. I have had my right shoulder operated on for holes in the tendons but they have ripped again and the thought of another 4 months in a sling on my dominant side is just a no no for as long as I can get away with it. I cannot lay on my bad hip so through laying on my right side permanently I have got a pressure sore on my ear which is agony. I cannot sleep on my back due to discs so I never seem to get a decent sleep even with Amitriptiline tablets. since October 22 my left shoulder has been agony the pain goes up to my ear and the back of my head then down to my fingers amazingly this week the pain has gone but it’s gone down to the middle of my spine and the pain is so bad I can’t seem to take a deep breath and if I move in certain ways it’s like being stabbed and makes me cry out ! I take naproxen amitriptiline co codamols along side fish oils vitamin D and calcium i rattle !!!

If you touch me on my arms / shoulder/back I flinch in pain the doctor says it’s fibromyalgia take your tablets “ can you give me anything different?” No I’m told ! I cry more than I smile I say ouch more than any other words if I sit I’m ok I’m told to move I do but I’m in agony some days are better than others but I’ve been in the trap of doing what I can while I feel good only to feel doubly worse in the next few days I’m so sick of life 😢

Trish9556

Hi @Gillyb

I wish I could say I know exactly how you are and give you some proper advice but the only thing I have in common is the osteoarthritis in my feet, hands and hip. I have it in my neck as well which hopefully is being fixed and some other non related stuff - COPD and Epilepsy as well so some days I feel like you to but no where near the scale of what you're dealing with.

I can send you love, hugs and an ear to bash if needed and maybe an idea about sleeping....have you ever tried sitting up to sleep? I do when my Asthma/COPD is particlarly bad and just surround myself with pillows propped up as best I can. The hip is horrendous trying to sleep and so far I'm coping with a pillow between my legs and painkillers. My hip is the one I sleep on so it's been very difficult, as you know, trying to work out what works best.

I am sure somebody on here can give you something more concrete than me but if you need to scream and shout at me I don't mind. Please don't think you're alone and nobody understands.

Love n hugs for now and take care

Trish xx

TLee

Gosh, can I relate to this. Just before the holidays I had a bout of pain-fueled depression that had me feel very "sick of life". I have OA mainly in my left hip, but also some degenerative disease in my lower back and pelvic area. Like you, some days the pain is not so bad, but one wrong move & I am screaming. Dealing with chronic pain can drag you down physically and mentally. I have at least managed to get out from under the mental cloud at this time. Some things that I feel have helped:

Being around people who care. Seeing friends & family over the holiday season perked me up tremendously. One thing that is fairly common when we're down is not wanting to bring others down with us & avoiding social interaction. Big mistake! Wise ones here have said, people WANT to support you, let them!

My new year's resolution to not be so hard on myself. If I have a day when I feel I just need to take care of myself, rest and let everything else go for a bit, no guilt! I have had quite a few days like that and thoroughly enjoyed them. I crochet, read, watch historical documentaries (my favorite), and instead of telling people, I've been so lazy today, I say, I had a wonderful day!

On the flip side of spending some cozy time at home, I find it's important to get out into the world a bit. I have a canine companion (that's a whole other topic, the value of pets as therapy!) who must be walked daily. Even a brief wander down our road and back makes me feel happier. No matter where you are, I'm sure that you can hear some sort of bird song, or see a tree!

The last thing is to just to give it time. I find that the really low times don't last. If you hold on, things really do look brighter on the other end.

I hope that your pain soon seems a bit better and that you begin to smile more than cry!

Moon

Wow I can so relate to this. I feel exactly the same. I have RA, AS, OA and fibromyalgia. All of which are giving me hell at the moment. Add in the fatigue and utter exhaustion and I am at an all time low. Some days I just don't want to carry on, what's the point when I know I will wake up tomorrow feeling exactly the same. I feel as though I am a burden, a huge burden to my husband and that he will be better off without me. I try not to complain and to keep going but days like today really make me feel worthless. I share your pain Gillyb

movingslowly

https://community.versusarthritis.org/discussion/59341/is-this-my-lot-till-i-die

Can you get referred by doctor to a consultant in a pain management clinic where their specialism is what it says on the tin, Pain management. (Not eradication, just management)

I started my journey on gp prescribed amatryptaline. They made me very sleepy. I'm a driver. Nodding off behind the wheel carrying passengers was no good to me.

Can you get out? Or amongst others? I'm currently without a proper job and have noticed staying in during a flare up and isolating myself increases stiffness and fixes my focus onto pain signals my body is sending me. All perfectly genuine and valid but I've also noticed I put on a bit of a brave face and am distracted by others when I'm in company or at work. (am aware of but focus less on pain)

Until I have your conditions I'm not going to pretend I know how they affect you. I have experienced that torture that has you questioning your own sanity though. Constant, unrelenting drilling at your pain thresholds. Little or no (legal) relief. Sleep & day to day functioning just a memory.

I went back to the medical professionals initially because they knew more about this stuff than I did and could review and recommend different combinations of concoctions to experiment with which gave me some hope and some sanity.

I'm a noobie to my diagnosis and changing my habits and coping strategies. I don't have job currently so can only afford prescriptions not Switzerland. I'm still in the honeymoon phase of Dmards and steroids and have just enough faith in the professionals to give it all a whirl but catch myself thinking, like you, Is this it til I die?

Like life wasn't hard enough without added complications. They say "You'll never get more than you can handle" This cracks me up 🤣 They have a higher opinion of me than I do of myself and have to wonder if 'handling it' is life's next big universal lesson. Something else we have to learn, accept and manage?

Which I guess is why we're all here?

The only thing I'm able to offer Gilly is ask to be referred to a pain management clinic, if you've already attended one, go back and ask for a review because what they've offered you isn't working for you. Tell them what you told us in your o.p. Perhaps they could look at other combinations of meds for you?

Have a look around the site at methods the good folk here use in addition to meds. Things like gentle exercises, icing, heating, over the counter pain stuff, extra support with cushions, pillows, bean bags. Gadgets and equipment to make chores easier. Social interactions, managing the worst of days etc.

If you find any good stuff, pass it along. I'd be interested in how to make the long game more tolerable 🙂