Been diagnosed with fibromyalgia for 4 years none of the traditional treatments have made any difference to me, meaning I have been in chronic pain for 6 years without any relief. The diagnosis of fibromyalgia was made by a doctor who I was not satisfied with. Every doctor I have seen since then has just agreed with him nobody seem to be trying to get to the bottom of the problem and throughout all of this my symptoms have gotten dramatically worse and I am finding it difficult to walk to sit to go about my daily life. I have general symptoms which could really be anything, joint pain in my knees, hips, ankles, wrists, back, shoulders and neck, fatigue and bowel problems. The only shred of information I have received over the years is I have an inflammation marker CRP of 20 and then of 14 two years later, they have never looked into this further they told me it could be ANYTHING. Surely if it could be anything you don’t just stop there. Any advice or if you have suggestions of what this could be or if this sounds familiar I would love to hear your replies. Anything at this point would mean the world to me.
Misdiagnosis?: Been diagnosed with... - Cloudy with a Cha...
Misdiagnosis?
Your situation describes mine exactly. For many years virtually every step has hurt. I too have bowel problems and many other systems are involved. In my case I have hypermobility syndrome. This not only affects joints but most of the systems in the body. I have diverticulae in bowels, urinary tract and blood vessels- the latter leading to detached retina. There is nothing that can be done about the syndrome itself. The joint pain which for me started as a child may possibly respond to some medication. My GP has suggested amitriptyline which I have not yet tried but which some people have found very effective. Currently I am following a special exercise program called Grow Young which I found online. It is led by a sport scientist who specialises in care of seniors especially those with arthritis. The idea is to build up supportive muscles around the joints. I am 68 and a full time carer for my 97 year old mother so a reduction in pain would be wonderful. I wish you well in your search for help.
Have you ever had an mri on your spine? It has taken me more than 30 years to be diagnosed with AS. I had raised esr and crp and multiple joint pains as well as problems with sitting. Have you ever had eye redness?
I've had a very similar experience. I'm sorry you too have had doctors just kind of give up, while you continue to suffer. I wish I had some advice to offer, but I've struggled with these same symptoms for over 15 years. I hope you have better luck.
I know this is rather old, but I wanted to add my two cent (or whatever that saying is).
As I understand it, fibromyalgia is more of a diagnosis of symptoms than an actual condition. I believe that in a lot of cases it's the diagnosis used when doctors don't know what else could be causing the pain, but it's clear there is an issue. If fibro treatments aren't working or you think you've found something that fits the bill I would say it's absolutely worth looking into and asking drs about.
I must say, the mix of joint pains, inflammation, fatigue and gut issues sounds like immune related stuff to me. There are sooo many conditions that fall under that bracket, but it might be worth looking into some (most are rather similar) and considering asking to see a rheumatologist about it.
In my case I have relatively mild pains along with fatigue, gut issues and some skin issues. My drs kept on just treating me like a hypochondriac (although one did mention the possibility of fibro which I think was to shut me up), but I managed to convince them to give me a private rheumy referral as a last ditch attempt. After listing my issues, rheumy said it sounded like palindromic rheumatism which usually doesn't show up on tests and can get overlooked easily. We decided to hold off on any treatment, but I'm just so glad to know it's not all in my head.
Hope that helps. 
