Has anyone experienced this? - Fibromyalgia Acti...

Fibromyalgia Action UK

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Has anyone experienced this?

Lindyloo53
Lindyloo53

I was diagnosed with fibro and chronic fatigue syndrome in 2013 when I was suddenly knocked off my feet vertially. I was at work one day and the next day I couldn't get out of bed. I was bedridden like that and managed to get out of bed after hanging on for most of the day to use the toilet, once a day using crutches to drag myself there. I would stop on the way back to get a drink of water. I only ate when my daughters would drop in on me and I'd get them to bring food and fluids into my room for me. After six weeks I was hospitalized and many tests were done on me. Then I was diagnosed with fibro and CFS. I was so tired I slept through nerve conduction tests that were done and the person administering the test was amazed as it hadn't happened to him before. I was told I wouldn't get out of the wheelchair they provided me with. I thought you don't know me and six months later not only was I out of it I was back to full time work.

Then I had two falls in which I fractured my leg and arm. My feet would just go numb asi was walking along and down id go. Again they did nerve conduction studies and that supported a diagnosis of peripheral nerve damage. In the past month my arms and hands and across the top of my back have developed pins and needles. This is now under investigation. Tonight suddenly my hand has become very painful and I can't lift even a cup with it. I did nothing to injure but it feels like it's been hit with a sledge hammer. I have already taken three lots of sevredol (morphine) for the pain. I have this to use prn for both fibro and nerve pain and I'm on regular gabapentin which really hasn't made much of a difference and I'm considering tapering off it.

I'm not sure what to do about my hand perhaps waiting to see if it spontaneously. Gets better?

Sadly I can see using my battery chair is fast approaching as the pain in my feet and legs makes walking difficult plus my balance is not good.

6 Replies
M0AL61
M0AL61Moderator

Hi Lindlyloo53,

I'm so sorry you have had so much to contend with, but you definitely sound like a fighter. I hope your hand problem resolves itself very soon.

Have you been seen by a rheumatologist and/or a neurologist? Have you ever been tested for MS? I'm assuming you most probably were, when you say you had a lot of tests done when you were admitted to hospital.

xx

Hi Lindyloo

So sorry to hear about your problems. With the hand arm shoulder problem I can comment that I have this too but it is not fibro related. Mine is the result of compression of the nerves in the neck due to osteoarthritis and calcific tendonitis in both shoulders. Might be worth further investigation with an MRI to see what's going on. I have regular chiropractor appointments and it seems to keep on top of it. I certainly know when I am due a treatment. Often we put everything down to fibro when other things are to blame. Nobody more guilty of this than myself - the calcific tendonitis was going on for months before I bothered to mention it to GP. Good luck let us know what happens

Have they ruled out Lymes Disease? That was one of the blood tests they ran on me at the beginning. Hope you get answers soon.

I have had recent issues with my hands too. They are constantly numb/pins and needles and virtually useless for any task. I was diagnosed with carpel tunnel a few years ago and had the release in the right hand about 2 years ago, however it didn’t seem to make much difference so refused the op on the left. I now find it’s likely it was never carpel tunnel after all but nerve damage the entire time, I also have similar issues with my legs on more of an intermittent level, they go numb and just will not hold me. My gp won’t entertain further studies as I am in the “Fibro box” so to speak, but this is to me different. I do know I have disk degeneration in my lower spine so in my opinion that is more likely causing the issue with my legs but I’m wasting my breath. My gp is not interested and my only referral is to the persistent pain team, (mental health and physio) suggesting I can think this all away! What makes me laugh is I’ve been through both services separately and neither can help me! I hope you get further than I.

🤗🤗💗💗😘😘🙏🙏

My legs often just go and I collapse on the floor in a heap doctor dis not know why it was happening then just said it is part of your fibromyalgia it happens I told the hospital and they said that it needs further investigation but then no one did anything last year it happened at the top of the stairs and I went straight down and knocked myself out I could not grab the railing as I had pins and needles in my hands so bad could not move them angain was told it’s part of my condition it seems like that is the answer to everything part of the condition they said the same in April when I eventually ended up in hospital for 2 weeks part of my condition turned out to be septic arthritis in my lower spine not nice never felt pain like it

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