Symptoms and diagnosis what was your experience

[diww1]

I am waiting for a rhematologist appointment. I have a lot of symptoms and a lot of other illness

I just wonder about others experiences what symptoms led to diagnosis as I know it can be a long process

I am so ill it's hard to believe it isn't something nasty (being tested for everything almost)

I feel for you all .. it's no fun at all x

edit by admin: removed capitals as can be considered shouting

[honeybug]

😊🙏🤗💗🥰🌿🌸🦋

[Badbessie]

My diagnosis did take about two and a half years. I already knew I had moderate to severe osteoarthritis in my spine and joints. But other symptoms suggested fibromyalgia. However other conditions suggested I could have an autoimmune disease. Each time I saw a different consultant and each had his own idea what it could be. I am not complaining as I was given every test known to ma. Ultrasound, MRI, x-ray and enough blood tests to make me light headed. Over the two and a half years I was first diagnosed with complex regional pain syndrome, then widespread chronic pain syndrome/fibromyalgia. Unfortunately there are some people who's blood results are normal with autoimmune conditions and my other conditions confuse diagnosis. I told the consultant I did not want anymore tests as I believed them pointless. Due to another condition they cannot immunosuppress me, so what is the point if they cannot do anything about it.

[diww1 in reply to Badbessie]

Thanks so much for your reply. That's similar to my current experience .. I will see what rhematologist says .. I have other specialists looking into other aspects of my health as I am very poorly .. housebound ... Almost unable to walk can't stand for more than a minute or less .. I have too many symptoms to list

I really feel for you .. does anything help your fibromyalgia x

[Badbessie in reply to diww1]

Sadly I have tried all the standard medications but for a number of reasons they failed to help or caused problems. I went on a pain management programme. They altered my medications but the patch they but me on suppressed my respiratory function and so was stopped. The programme did help me with pacing, realistic goal setting and maintaining movement but there were limitations. Like you I had a number of conditions and I was what they called a complex case. Basically the only medications I can use are opiate based. My day is planned around what needs to be done and what would be nice to do. The idea being to prevent flair ups of severe pain. Like most on a good day I would do to much and suffer for it later. By being strict and planning rests etc I find I can avoid some of the more severe pain periods. Cleaning the kitchen can take all day, breaking each task into smaller parts. That's what pain management would call a realistic goal. The real problem is at times the people around you. They cannot understand how doing one load of washing can take all day or how completing a few stretching exercises can be an achievement. But the whole idea is to stop the boom and bust cycle by fairly rigid pacing.

[diww1 in reply to Badbessie]

That's hard for you I am sorry to hear that .. I can't do anything much at all .. I have carers and my husband does the cooking and cleaning and washing and all other things I just sit all day and can barely walk now due to my arthritis so it's very hard .. I have several conditions which make me very complex as you mention too. So I truly empathize.

You can only do things the best way for you ..

[Maya23]

I already had Lupus (autoimmune illness with similar symptoms such as joint pain, flu like aches and fatigue) so I was already seeing a rheumatologist.. but then I started getting burning pains and weakness in both arms and legs with each flare up. Saw neurologist who did more tests including MRI on head and neck. Then diagnosed with Fibromyalgia. Started taking Citalopram in morning Nortriptyline at night and pain killers during flare ups. It’s been hard to manage at times.

[diww1 in reply to Maya23]

I feel for you I am waiting to see a rhematologist to see if I have fibromyalgia too

Did your MRI not show any disc problems in your neck or is the tingling etc all related to fibromyalgia

[Maya23 in reply to diww1]

They put all the tingling burning down to Fibromyalgia even though I have some wear and tear in my neck and a small brain tumour (grade 1 -slow growing so being monitored). I think if it was due to those things I’d likely have the burning tingling all the time but I only get it during flare ups. I think the underlying cause of Fibro might be an unknown virus deep our system which targets nerves and nervous system. Just a theory but it makes sense to me.

[diww1 in reply to Maya23]

I am sorry to hear about you have wear and tear and a small brain tumor it's interesting how you get the symptoms during a fibro flare

You may have a point about a virus who knows .. I've seen another interesting post today about those who get it

If only they knew for sure and could stop it x

[Hidden]

I used to suffer ankylosing spondilitis ,it went into remission after 8 years,I went to my g.p because I had pains in the same places as A.S. He sent me to a rheumatologist who told me that fibro pain comes in the same spots but the tip of muscle that is attached to the bone that is painful,he asked me if I had suffered a trauma recently and I had just buried my father who died due to medical negligence..I have heard others tantrums has triggered fibro and cfs

[diww1 in reply to Hidden]

Thank you for sharing I've had trauma ally life serious high trauma and stress so it wouldn't surprise me at all if it's linked

I so sorry to hear about you father that's very difficult to live with for you

[Hidden in reply to diww1]

Thank you hun, it was 18years ago now so not as painful a time..

[diww1 in reply to Hidden]

I am glad it's not like that now for you

[Cardmaker60]

Hi there. I was finally diagnosed last month after a long journey. First it was my under active thyroid, then the menopause then chronic fatigue with arthritis. I have had to pester my doctors to get more tests done. I did my own research, this site really helped. I understand that ruling out other things, the process of elimination, is how Fb is diagnosed but I think it helps if you find out about your symptoms as much as possible yourself.

The consultant diagnosed me then that was it, no follow up. I’m now waiting to speak to my GP to discuss gabapentin or something as nothing has been offered.

Having worked in the NHS for years, I’ve always advised patients to take charge of their treatment, appointments etc, when something is wrong as they can so easily be missed, lost in the system etc. chase things up, keep requesting appointments, tests, results.... you know your body better than anyone.

Sorry this is a long post. Good luck with your journey and stay with this site for information and support. 🙂

[diww1 in reply to Cardmaker60]

Thanks for sharing that with me I am glad you're on the ball and know what to do to get somewhere with your health care. . I know we have to be more active in getting appointments and results and knowing our own bodies ... I've learnt that from some of my other conditions

I hope you get a follow up soon on your diagnosis and some help x

[Cardmaker60]

Thank you.