Losing hope with lost mobility.. any insight would be helpful

[MariaJay]

Hi everyone! I found this site while tearfully searching the internet for anything I could find about rheumatoid and lost mobility. I am incredibly discouraged right now and I am trying to find something, ANYTHING, that will be a source of hope and motivation to keep going..

A bit about me.. I am 38, I have rheumatoid and fibromyalgia. I am also morbidly obese, (5'7", 296 lbs) and have issues with binge eating and sugar. To make the wonderful trifecta, I am an opiate addict so I cannot be treated with the pain medication that most people receive when they have the shoulder/wrist/hands/back/hips/knee/ankle and feet issues that I do.

Both knees are bone on bone and need replacing, but I cannot get this done until I have lost at least 80 pounds. I am pursuing gastric bypass but even if everything goes perfectly it is going to be about 6 months before I can have the operation. Then of course there is the time involved to drop the weight.

I am extremely depressed. I can't walk. I don't mean the can't walk like some people say, "Oh it hurts so bad I can barely walk," but they navigate their households fine and can get from the house to the car and back without assistance.. I mean, it takes me several tries and a lot of positive self talk to stand up. I cannot staighten either leg or my back. Once standing I need something or someone to hold on to while I navigate whatever tiny, necessary distance I am attempting, like, my bedroom to the bathroom or the living room to the bedroom.

I've been in treatment for the opiate addiction since March of 2013. I detoxed willingly, but only because my life had become a complete mess and I was afraid of social services taking our son away from us. Our daughter was 17 at the time and happily staying with my parents, but they were threatening to remove Son from the home if we didn't comply with everything they said. At the time sheer fear for my anxious little guy and not wanting him to spend even one night in a stranger's home kept me in line, even when I couldn't sleep, or sit, or stand or move without agony.

Things are a lot better now, familywise. Son has progressed from an extremely sad and anxious 2 grader that couldn't read social cues and was getting in trouble several times a week at school to the happy confident young man finishing up 4th grade. That is partly due to me being in treatment, partly due to Husband working on his anger issues and partly because we got Son some services he needed. DCF has been out of our lives for over a year now, thank God. Daughter is doing well also, working 2 jobs and attending school.

I'm the one whose falling apart. The only reason why I force myself out of bed or my chair each am is because to eat or go to the bathroom and even these necessities require me to psyche myself up. It hurts so much to put all this weight on my painful, shifting, clicking joints. Walking even with a walker has become so difficult I only do it when I have to. Our church, seeing how diffcult it was for me to walk, bought me a wheelchair recently.

I have mixed feelings about the chair. It's a relief to know that something important to me, like church, Dr's appointments or one of the kid's functions doesn't depend upon me being able to walk or having a really good movement day. But I also feel sad, and dependent upon Husband. And it doesn't solve all my mobility issues outside the house either. Due to the damage in my wrists and hands, I can't wheel myself so if we're out and I need to go to the bathroom, I'm up on my shaky, painful knock knees. Also we don't have a ramp for the apartment and the way the entrance is set up and the width of my chair mean that to go out of the house I need to stand up, descend three steps and then walk the 10 feet to where Husband has the chair waiting. And then when we get to the car I have to heave my bulk from the chair to the seat in my KIa. And even that little bit of movement is dreadful.

I also feel guilty for giving in to the pain. It's arthritis not a stroke or a spinal cord injury. Should I be forcing myself more?

[Hidden]

Mariajay: Well done for having mastered the opiate problem, a great achievement. I empathise with your fibromyalgia and arthritis problems, have had them myself for well over 40 years. Despondency and depression are rife when you are in constant pain, but I have discovered over a long period of time and with a lot of help with information from others that's to deal with one thing at a time, and use that determination that you so obviously have, things do eventually improve. One thing I find unbelievably useful for help with the pain are 'wheat bags' that you warm up in the microwave, They are better than hot water bottles because they mould themselves around knees and other awkward places and give a lot of comfort so a little less pain relief is necessary . just a small suggestion. Hope it helps, if only a little. Prayers and good wishes for the future.x

[Hidden]

I truly sympathise with you. I too have Rheumatoid Arthritis and have found that other people think that it's the same as Osteoarthritis but it's not! I find that emotional stress always gives me a flare up! I moved house a couple of months ago and with the stress of it all beforehand, I had a major flare up with my left knee (yes, I know with Rheumatoid they should be balanced but they're not always!) once I'd moved, all my other joints decided to join in too!

I'm already on 8 tablets of Methotrexate a week and take strong co-codamol for pain. I was prescribed anti-inflammatories but the swelling still didn't go down at all. Now I'm on Prednisolone until my Rheumatology appointment at the end of July and I feel so so much better. Although my left knee still isn't right, the rest of my joints have settled down to normal.

Unfortunately, due to my move, there's been a bit of a gap between my Rheumatology appointments but my old one where I used to live had said that if more joints became involved then perhaps I could try the new biologique drugs. I know that steroids, although they work really well, are not meant to be safe for long term use.

Do you see a Rheumatologist at all? Ask your GP to refer you if not. Rheumatologist so can prescribe things that GPs can't! Another thing that I've found really useful is going to see a good Physio. Sometimes, when we're in pain, we move in such a way that our bodies seize up and perfectly healthy muscles and joints refuse to cooperate! A good phsiomcan really help help with this.

I hope that this is a bit of hope for you - go and see your GP, perhaps he could organise a short course of steroids for you? Get yourself seen at the hospital by a Rheumatologist if you don't go already and if you do phone up the secretary and ask for a sooner appointment as you're in so much pain. Find a good Physio and see if they can help. I had to see a Physio privately as I was in too much pain when I first went to wait for the NHS and he was worth his weight in gold!!

Thinking of you

Fiona

[ElaineL1988 in reply to Hidden]

Have you thought about swimming? Aqua aerobics might be an idea as it will help with the weight loss and it is non weight bearing. I am 27 and have had Ra for 8 years. I used to be really active, but have had to stop most sport and walking is also now difficult, painful and exhausting. The only thing I can do is swimming or cycling, but I would say swimming might be a positive idea for you. Keep your chin up because you have come so far already. Keep on this sight as it helps me just by knowing I'm not on my own. X

[flow4]

I'd also suggest swimming. I am limited in how far I can walk, but I swim and do aqua fit, and really enjoy both. I started at the end of 2013 when my GP said "I think you need a hip replacement", and have continued 3-5 times a week ever since, except for the 6 weeks immediately after surgery. I've lost some weight and gained a lot of muscle strength, and had a significant reduction in pain, especially in my knees, which hardly hurt at all now. The best thing about exercising in water is that you can move, your joints are supported, and it doesn't hurt (or hardly)! For me, the psychological relief has been huge and as important as the physical benefits... My pool also has a jacuzzi, which I sit in afterwards, and that's fabulous too!

I hope you find something that works for you. It sounds like you're having a really tough time.