AS or Fibromyalgia

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Hi everyone. I'm new to this group. I'm 30 years old and have suffered back pain and knee pain to an almost debilitating stage and the fatigue can be immense. I've had this since I was 17ish. Quite often out of nowhere my knees will 'pop' or 'crack'. This can be when I'm walking, starting to sit, try to kneel or even stand still! Sometimes the pain is horrendous. I've also noticed my back has become less flexible over time (in fact my whole body). My calves feel heavy and my feet hurt like crazy. I find it hard to sit for very long without my spine hurting. My wife has tried massaging my back, but she hates it because she sees the pain I'm in. I have been to a Chiropractor, but I seemed only to get worse! I have been to the Dr and they seem to only want to look at one thing at a time rather than collectively. However, I do get some violent jolts or shakes which has been diagnosed as Myoclonus. It has been suggested by one Dr that I may have Fibromyalgia, however, I read through the literature and although some of it sounds familiar I'm not so convinced. By chance I then read an article in my local news paper drumming up awareness of AS. I'd never heard of this before so I googled it and I would say the symptoms described struck a chord with me. I'm yet to discuss this with my Dr. Has anyone else found the same awkwardness in regards to getting to the bottom of what their suffering from? I'm convinced my mother also had it, although it was never confirmed. I can remember how much of a struggle daily life was for her. One Dr even tried telling her she was a bored house wife and that she needed to get out of the house more! Unbelievable. Anyway thanks for reading this, just trying to build up more of a picture of what it is I have :'

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  • Posted

    Hi and welcome. The one things that you will find is that most of us have been suffering for years before "someone" getting to cause. My son has been suffering since he was 7 and finally got diagnosed when he was 14. For myself I've always had back pain for as long as I can remember however it wasn't till I was 30 that's I started having a condition called iritis which caused the doctor to look at other things besides the "oh you need to excersise more." Or something along that line. In regards to fibromyalgia ...I believe that a person who suffer with any chronic pain that it is a condition that you could be have. For myself I was also diagnosed with FM just this last year. You didn't mention if you had any children yet but if you don't it maybe something that you want to talk to your doctor about. It has been very tough watching my son go through this and I know that he has decided not to have children (he is 22 now). Good luck and I've glad that you have discovered this site.
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  • Posted

    Dear Chris

    The NHS advocates the 'expert patient' - so I would arm yourself with the information, see a different GP, explain what you have said above and that you want a referral to a rheumatologist to get to the bottom of the problem. There is no harm in starting to follow some of the dietary advice which is mentioned in this forum - you never know you may be able to eliminate the source of the problem rather than end up treating the symptoms (which is what current medical practice does).

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    • Posted

      Well. A little time has passed since I last posted here. In that time I am finding it increasingly difficult to get through a day without having some sort of flare-up. 

      The more I have read the more I am convinced that I have AS as opposed to FM. Well, even though I feel everything points that way, my doctor has been leaning more towards FM and has admitted me to the pain clinic (12 month wait).

      However, my doctor did send me for an X-ray and has ordered blood tests. Although, I was disappointed today when I was told that the X-ray has come back normal. Not because I want AS, but because I was hoping to finally have an answer to all this pain. I am not a person to ever usually complain but I just fear that I will have no diagnosis soon.

      Sorry to go on. Anyone else have the same/similar problem?

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  • Posted

    Hi Chris

    Lucy's advice is right - waiting for a diagnosis can delay positive steps that can be taken with many autoimmune diseases. My dad has AS and is now approaching 70 - my own disease affected similar bones / joints (lower back, hips, rib cage) but I was never officially diagnosed - but I know!  My started at 17 too - I'm now 48.

    All current research points to RA, AS and even FM being a reaction to and or an imbalance of gut bacteria, with food intolerence issues also more relevant than many doctors care to explore - therefore diet is key and can help.   I don't believe that drugs are always the right way to treat these diseases - but believe that drugs are required for some severe aggressive onset forms of RA - but even then diet and infection should be explored.

    Best google searches I can suggest are 

    fasano autoimmune (check out his youtube video)

    vojdani rheumatoid

    kickas arthritis 

    sickopportunity arthritis 

    Hope this of some help - experiment be strong and you can find some relief!

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