Beginning of my Fibromyalgia Journey

[John-Paul]

Let me introduce myself, I am a 57 year old male who has suffered random pain , brain fog etc for at least 15 years but ignored it as general aches and pains….occasionally thought I might have MS but never pursued a diagnosis.

Over the last 3 or 4 years things have gradually got worse but not terrible (had Covid 19 in Oct 2020) had 3 vaccinations 2 Astra Zeneca and 1 Phizer.

In the last 6 months the symptoms have got more constant Brain fog, pains in left shoulder, neck, shooting pains in head, ocular migraines, upper rib and back pain, lower back pain, left hip pain, pain in upper left arm, random tingling and numbness, burning sensations hand and leg, ankle pain, wrist pain, pain in both thumbs, twinges in knee and elbow joints.

Over last 2 months I have had both NHS and private blood test etc everything is normal and within range, also had test for movement which showed a number of issues.

I have now been referred to a Rheumatologist for diagnosis - what would the Rheumatologist test for, will I have X-ray, ultrasound , more bloods….what should I expect and how long does it take before getting a diagnosis ?

And if I am diagnosed what is the treatment if any ?

[Nelly1]

Hi John

I am 57 too, I first fell ill in September 2013 and was diagnosed by Rheumatology in July 2015.

As far as medication for Fibro goes I’m afraid it will be trial and error as everyone responds differently to medications.

I originally was put on tramadol codeine naproxen gabapentin

I’ve tried lots of different medications over the years and I’m now on

Tramadol

Zapain

Methotrexate

Folic acid

Omeprazole

Atorvastatin

Plus I was also diagnosed with Degenerative disc disease and Ankylosing Spondylitis in 2018 so I’m also on 2 injections (Biological Therapy) per week.

The concoction of meds I’m on now have worked well for the last 5 years or so.

I also had an anterior Discectomy and fusion 2 years ago to replace a disc with a cage in my spine and now the next disc has gone, had a steroid injection for that but it’s now worn off, I now can’t get an appointment until January so I just have to wait.

Again whatever medication they put you on it will be a case of trial and error to see what works for you.

You are in the right place with Rheumatology, in my eyes that’s the best place to get further help as most GP’s just dismiss you and say get on with it.

Hope it all goes well for you.

[Bertiemum]

As far as I am aware (although no expert!) there are no tests that can diagnose fibromyalgia conclusively. I believe it’s a question of elimination of other health issues. Blood tests don’t show up fibro but they are done to see if there are any inflammatory markers which may point to something other than fibro, ie polymyalgia.

I was not referred to a rheumatologist. I was diagnosed by my GP who had studied fibromyalgia and was very clued up. I am fortunate that I have 2 very good GPs who do not dismiss me as neurotic, but offer help and support.

There is no cure for fibromyalgia. It is trial and error as to what will help you. I take Amitriptyline and Duloxetine at night which help with the pain and pins and needles etc. Evening Primrose oil can help for some people, and Co-enzyme Q10. I take both every morning. I try to keep as active as possible as sitting down for long periods makes my muscles seize up. I have a dog who I walk every morning.

I know all of this is probably not very helpful as we are all different, but just to let you know you are not alone.

Good luck! Hope you can find something to help.👍🙏😀

[bookish]

Hi John-Paul, with those symptoms and your history I'd be wanting to double-check those 'normal' blood results, particularly for B vitamins. Serum testing alone cannot rule out a deficiency, although it could rule one in. Assuming that you are not taking B12 or a B complex already (which will make things much harder to diagnose, so if not, please don't until testing done), then you ideally need FBC, serum folate, serum B12, active B12 (holotc), homocysteine, methylmalonic acid (MMA), anti-intrinsic factor antibodies, anti-gastric parietal cell antibodies, serum gastrin and vit B6 if possible. Best to see where in range vit D and magnesium are too. No doubt you have copies of all your results so you can check where in reference interval you fall compared to optimal figures - anywhere 'in range' is not necessarily right for good health. If you were taking any B vits, then results cannot be relied on without care, or you could come off for a few weeks and retest, although some markers will have probably shifted and may not return to base levels. Hopefully the Rheum will refer you to a neurologist too, but don't expect either to understand vit B12 deficiency. They may, but may well not. Mine didn't. Fibro can sometimes occur alongside small fibre neuropathy, or they can be confused with each other, similarly to MS and B12 deficiency (or Pernicious Anaemia, the autoimmune form). Cheers

[Dinkie]

good luck in your quest for a diagnosis. Fibro is different for all of us so treatment is very much trial and error. Many of us can’t tolerate prescription meds so rely on other things such as Epsom salt baths, diet, gentle exercise, heat bags, tens machine etc.

Hate to say it but it’s never a quick diagnosis. For me the symptoms and investigations began in 1987 and I was finally diagnosed in 2014.

Keep a diary and make a list of questions for the rheumatologist. This will help to ensure you don’t waste the appointment and help prevent the fibro fog taking over and you being unable to think of your questions. We have all been in the position where 2 hours after the appointment we think why didn’t I ask this or that.

[klr31]

Ask for the actual numbers of your blood tests, with ranges, so you can check them yourself. Karen

[throbbingpain]

Hi Paul

So sorry to hear of all the issues you are going through .

I'm also 57 & experience all the problems you are describing .I know you mentioned you have had various blood tests & are seeing a rheumatologist..

Have they mentioned Lupus at all ? I was diagnosed with it over 20 years ago & it's an autoimmune condition which also has secondary health issues associated with it .Some of which you have described .

I hope you can finally have a diagnosis sooner rather than later.

Best wishes & good luck .