Help Misdiagnosis?: Been diagnosed with... - Andover Fibromyal...

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Help Misdiagnosis?

FedUpRedHead profile image
2 Replies

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.

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FedUpRedHead
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merlin1967 profile image
merlin1967

i was the same i went to my gp demanded politely in tears that i need other referrals fatigue could be me cfs as with most people they come hand in hand i have fibo i use fentanyl patches i started on 25mg now on 200mg to help with pain in my back mostly yes they are opiate but most strong pain relief have opiates in i'm not drugged up i drive when well i have a adapted car as i have problems with my mobility mst i use they are both slow release so it tops up your medication every hour so you dont feel sleepy its not for everyone i take gabapentin low dose for fibo nerve pain i was told my symptoms were all in my head i proved them i was right i was watching a documentary on jfk he had addison's disease i recognised this autoimmune condition my family had it i asked to be tested its to see how much steroid was in your body you need to read up on this condition it is rare but i was positive nil steroid it can kill you i knew there was something wrong i proved them wrong again you have to persuade your gp to refer you and say i need to know whats wrong with me the pain clinic you can be referred to re your pain if you have to go to a different gp in your surgery to get heard do it

Admin_AFMCG profile image
Admin_AFMCGPartner

Hello FedUpRedHead

Sorry to hear you feel you may have been misdiagnosed, it can happen due to the lack of diagnostic test for Fibro at this present time although I believe it is probably a small percentage of people. You are right the symptoms are similar to many different conditions and it may be that you need to ask for a second opinion which means starting from the very beginning again going through all the tests & investigations. I had a second opinion as at first I was diagnosed with a frozen shoulder only which didn't explain my other pains - then they diagnosed Fibro. Wish it had only been a frozen shoulder now!

Here's some information about a second opinion, which you have a right to ask for if you think it is needed.

nhs.uk/chq/Pages/910.aspx?C...

I wondered if I could draw your attention to a post entitled 'How do I lock posts so only members of this community can read them?' as I see this post is not locked. All the information you need should you wish to lock it can be found in the post below;

healthunlocked.com/afmcguk/...

Do let us know how you get on

All the best

Emma :)

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