Fibromyalgia (Fibro) A Cruel Ailment

Fibromyalgia (Fibro) A Cruel Ailment

Hello, I am a middle age individual who has been living with Fibro over the last ten years. It is a cruel illness that has resulting in numerous steroid injections, physical therapy, and a L5/S1 fusion. My leg hurts so bad at times that I could just scream; now they want to do a huge rods and pins surgery on my spine, T12-L4 which would solve the severe scoliosis. They say that Fibro is overactive nerve pain, so will a major surgery solve the problem or increase it.

15 Replies

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  • I would personally, steer clear of spinal surgery. I heard that they had found out that fibro people had far too many nerves, far more than the normal amount. I just wish they'd find something to stop the nerve pain soon.  Wish you well. I know how horrendous this is

  • You have a tough decision .....I wish you the very best !!! Peck.😊

  • Hi Angel4793

    I really sincerely hope that you are feeling as well as you possibly can be today? I have pasted you a link below to our mother site, FMA UK and I genuinely hope that it is useful to you: fmauk.org/

    I am so genuinely sorry to read of all of the health issues that you have endured and that you have such a big decision to make on your surgery. I want to sincerely wish you all the best of luck and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • That's a conundrum.  To some people according to what is exactly wrong spi al surgery has been a miracle to others ithasjust made their condition worse.  Having had to deal with neuropathic back pain for about 7 years now I would not want  to risk anything that might cause it to increase unless there was a really big percentage chance of it being  completely successful.  I think you need to really think about it and discuss it with your team to see what the outcome realistically is.

    There is a Pain Support site that has a forum and it might be worth asking the question there as when I used to go on it there were many people who were about to have surgery or had recently had it.  Good luck with whatever you decide.x

  • I am not in the UK, but in Australia & felt for your troubles.  I could not recommend surgery, as I have tried and became worse.  If you must speak to a Neurosurgeon not and Orthopaedic surgeon. 

    I had symptoms of Fibromyalgia in my early 20s many years before diagnosis.  Now at 81 + with a whole history of Cardiac (CABGS -1981 & 1997 -Stent 2006_ TIA late 1981, Atrial Fibrillation- RF Ablation 2016 - now dependent on a Pacemaker to just stay alive, Pulmonary, Diabetes Type II, Fibromyalgia & CFS & severe Spinal problems with constant pain, plus a few other problems,  I can only suggest that you make up your mind not to let anything stop you.  There are many who will take your money and give you nothing.  I was stopped once and found it hard to start up again, but I found a new life, after my TIA, as I was not permitted back to my original work, for safety reasons, so I studied and became a Trade Teacher and absorbed my self in doing that well, helping students.  A real cure may come in your lifetime, but don't dwell on it as it will not help.  - Edited By Admin

  • Thank you so much, I have an appointment already scheduled this coming Wednesday with my Neurologist and will discuss my dilemma with her. It is often advised to seek the opinion from more than one professional when deciding a life changing step as this. Sometimes when we need to make a drastic surgery decision it is good to hear the opinion of others who have got through the same dilemma.

  • Hi

    I have 2rods in my back same as you might be having I had my op in 1994 at the age 29 to be honest with you I have never been free of pain I am sorry that this may not be helpful maybe you could speak to scoliosis society take care

    Love beth

  • Thank you for your honest opinion. When I made the statement of being pain free to the surgeon, he told me that the surgery will not solve the back pain but might help the leg pain. The key in his statement of, "might" does not appeal to me. I had an aunt who had back surgery and she seemed to be in more pain than before, from what I can remember.

  • Hi

    I'm so sorry to hear that. You have a lot to contend with and think about.

    I'm afraid I cannot help as I don't know about any of the surgery  you've mentioned.

    All I can say, is research everything and ask for 2nd opinions if your not happy.

    I wish you the best of luck and hopefully a better future.

    Best wishes.

  • So sorry you're going through this. I hope you can find a solution to suit you. 

  • Hi Angel4793, what a terrible choice to have to make, I would make an appointment with my GP to find out a bit more. I am fortunate in that I had spinal surgery but my preferred GP explained as much as he could. I really wish you well, and hope you get the answers you need. Good luck.    Izzy x

  • Hi, and welcome, 

    It's a difficult decision to have surgery.  I have been told that they will only do my back if I became bedbound, in some sense I am happy because I don't have it as a choice.  I do need carpel tunnel and shoulder surgery but am scared in case it stops me sewing - the only thing I can manage nowadays. 

    Having said that I have had 2 titanium knee replacements.  With my old consultant he actually said that it possibly would not make a lot of difference because of the fibro.  Fortunately when I moved my knew consultant disagreed and went ahead.  Now I still can't walk - they were done for pain relief, but to get rid of that pain, which was like walking on broken glass was unbelievable. Yes it still hurts but it is a different pain and it was definitely well worth it.  It was done under a epidural rather than a general and initially they had a problem as my back damage has blocked nerves but kudos to the anaesthetist he persevered. Initially it made me more incontinent but that did settle back to my normal.  Hope that helps even though it was a different area 

  • Thank you, your reply is very helpful and the thing with surgery is to weight out the pros and cons to the surgery and if the outcome will be better than before surgery. I had both wrists done due to carpal tunnel and it was worth it to relieve the pain that would wake me up during the night. Try to get a surgeon who is familiar with the surgery using two incisions, the recovery time is shorter.

  • Good Luck Angel, I have to go for my back surgery consult soon and they are using words like may help and hopefully and pretty confident.  Unfortunately for ppl with Fibro sometimes we would give just about anything for a little tiny bit of relief.  Sometimes I think it may block our brain from making more logical choices rather than one that "may" give us hope or relief

  • I'm in the same sort of pain as you and have had it for over 45 years started when I was 12 and it's just getting worse , have had no sleep for three nights at all because of pain .I see an osteopath every month and she said to never mess with your spine ,I hope this is making sense I'm just beyond tired , please forgive any typos . X

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