How do i get a diagnosis

[Max6]

Hi I am new to this I have been suffering for some years with pain all over my body unsure if it is muscular or bone but is getting worse, dr put me on gabapentine, not sure its doing anthing waiting again for physiotherapy. Have got osteoarthritis in hands but reumarologist not helpfully. Its difficult to explain the pains and burning but fits the discription of fibromyalgia , any advice would be appreciated.

[LoneEra]

Hi Max, sorry to hear you’re suffering and the rheumatologist hasn’t been helpful. Your GP can in theory diagnose fibro, but you might be better off asking for a referral to the Pain Clinic or to see a different rheumatologist. Good luck x

[saluhouse]

Hi Max6. I was in your position - saw. Rheumatologist who sent me to gym classes but nobody mentioned fibromyalgia as a possible diagnosis. I couldn’t do the class as I was in too much pain.

I was later sent on Pain Management course. A physiotherapist there told me that the consultant was reluctant to give fibromyalgia as a diagnosis because she felt it was too depressing. Because it is a lifelong condition with no real cure.

I disagreed then - and I still do. I think it’s far better to have a name for what you are dealing with. Then you can investigate the condition and get some advice as to how to cope with it.

So you have come to the right place. Everyone here understands and sympathises with how you are feeling. So keep reading the posts and you will have the information to be able to go back and ask your doctor for a proper diagnosis.

Best wishes xxx

[Arymretep in reply to saluhouse]

I agree , there’s nothing worse than not knowing what’s wrong with you, the biggest thing with fibro is accepting it , coming to terms that there is no cure and learning to live with it .

[LoneEra in reply to Arymretep]

Absolutely. And once you know you can at least try things to make it better. I don’t think the medical profession is very helpful in their communication around fibro. It’s either really patronising or depressing. What we need is someone to say “yes, it’s rubbish, but here’s some things you can try.”

[Farmerboy in reply to saluhouse]

Hello having to much information about our health conditions can cause a negative effect on one’s self. I have MS and there is plenty of information to download as pdf files to read at a later time but knowing that there is no cure and reading about the possibilities of my conditions in the future can be upsetting. So I have plenty of reading material about MS but I am reluctant to read ahead of my conditions.

[saluhouse in reply to Farmerboy]

Hello Farmerboy. Of course I can understand and appreciate what you say. We all have to protect our mental health as best we can.

But I’ve got a very vivid imagination and I catastrophize (is that a word?) every new symptom. So - just for me - it’s better I look it up or ask advice on here.

Look after yourself. Best wishes xxx

[Yassytina FMA UK Volunteer]

Hi there, I would take daily notes and show your doctor , it does give them a better picture of what’s going on a regular basis, my doctor diagnosed me, had some blood tests to rule out anything else going on , and did a pressure point test on certain areas of my body which I reacted too. from what I have read here most doctors will get you to do the bloods 1st and yes some refer to a rheumatologist, come back and see us on the forum and good luck in getting some answers x

[Max6]

Thank you all so much it really helps nowing someone listens 🙂

[saluhouse]

Hi max6. We aren’t just listening - see us as your cheer leaders with the Pom poms. Go back to the doctor and get some answers!!Best wishes xxx

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome. You may find out patient information booklet useful at fmauk.org/publications

[Carlt]

I actually wish I hadn't got a diagnosis. I felt like it put me at a dead end and was very much "You have fibromyalgia. There's nothing we can do about it. Go home and wait for medical science to catch up and offer something new."

Before my diagnosis I was meeting my GP every month for new tests, bouncing around theories and comparing research.

Since they decided it was fibromyalgia I feel like I've been popped into a box and forgotten about.

All of my other ailments are tangible things that they can treat so the fibro has just been shelved and never mentioned even though, to me, it is very much still there and is the worst of my problems.

[simonsgirlie in reply to Carlt]

I am in the same situation as you. I was told by one of my consultants that their colleagues think fibro is a fictitious ailment and that’s why no one wants to help. I experienced this first hand when I was rushed to hospital and my daughter mentioned to the ambulance crew that I had fibro and their reply was but does she have any real medical conditions???

[Canbedone]

Max Sorry for the slow reply,

There is much good information in the responses but I might add that Fibromyalgia is a "Syndrome" which means a recognised set of symptoms but no known cure.

Keepings notes day to day is good. Suggesting Fibro to your Doctor helps because they can only think in 10 minute slots and that is where it ends - when you suffer it perpetually.

Traditionally this gets referred to a Rheumatologist but right now it is quite doubtful that is even the right specialist. It seems to behave like a Rheumatic disease but it might not be. It could be an undiscovered virus, a post viral condition (Long COVID is one), it could be hormonal and that might have a cause or it could be genetic, allergy or intolerance etc. Worse it gets mixed up with Detectable diseases like Arthritis and masked by the first diagnosis.

Whichever it is, you get labelled and that is a permanent condition but it is recognised as a Disability and that helps. That does tend to come with "but it cannot be cured". However there are medications that can help.

There may be sources of pain that are real and involve swelling but that is rare for Fibro. normally suffers feel pain but nothing much s visible and it is nicknamed the "invisible disease".

The pain may be a sensation without a physical cause and this generated within your brain. If so Anti-depressants (SSRI's) Serotonin Re-uptake Inhibitors are sometime prescribed. They are prescribed not because you are depressed (but that is a common factor) but because it prevents Serotonin hormone droop that tend to make you very stimulus-sensitive - e.g. touch can become soreness, contact = pain, noises amplify, acoustic shock hurts, flashing lights become overwhelming.

There is also Brain Fog where I have picked up on the USA description for it as Silent Migraine - everything migraine except a headache. If you get like that try shutting your eyes and emptying you head for 40 minutes. SSRI's will also help with that. Citalopram is gaining a reputation for low side effects.

Fibro for most has flares where it is worse than normal and tolerable becomes near incapacitation. I found daily Vitamin D3 dosing at 25Mcg to be essential for me. I suffer fewer flares since I got diagnosed with ultra-low VitaminD and took the big supplement. It works with Vitamin K2 to form bone so it is worth having that tested if you have bone issues too.

I tend to get exhausted quickly too. I also suffer from muscle wastage and that is certainly "real". My legmuscles are now 25% even though I try to stay fit. That is called Myopathy:

"Myopathy is a general term referring to any disease that affects the muscles that control voluntary movement in the body. Patients experience muscle weakness due to a dysfunction of the muscle fibres".

I am having some success following leading-edge theory at the moment and will publish my self-experiment soon when I can be sure about finding a a result for me.

Getting diagnosed has up and down sides but it does allow you the Recognised Disability that does get some proper attention to something that is otherwise invisible.

You have done a very good thing by arriving here. There are many kind and understanding suffers here who will share what works for them. Best wishes to you Max

[Onedaymore1 in reply to Canbedone]

I’m new to this site & just reading the variety of posts from members is a help for me (FMS & tons of other associated health issues). What I have felt immediately is that it’s not all in my imagination, that others are unfortunately, in the same position/life journey helps me. To hear others explaining similar symptoms & shockingly poor experiences from the medical community . It’s not their fault though, they have no proven to work care path after FMS is diagnosed & often use off licence for FMS such as anti-depressants / pain relief . As previously mentioned often it’s perceived to be a made up syndrome/illness. In a way it is, I feel it’s a diagnosis of exclusion, all manner of medical tests are done & usually over a lengthy period of time. After, which, it’s at a point where whatever is wrong isn’t likely terminal & FMS /CFS is diagnosed & patient is left to get in & live with it. It’s interesting the similarities between long Covid & look at all the focus that’s getting at the moment 😩. I too feel I have with after effects of a virus I.e EBV (Epstein Barr Virus ) was mentioned as a throw away comment on one of my early blood test results. GP not interested. Or, that I have chronic Lyme Disease /Mosquito transmitted Disease that’s hanging on. I have had many bites with target lesion, Hugh inflamed areas on verge of cellulites. I have had UK Lyme test which was negative & suggested retest but GP said no need. It’s commonly thought the test is only reliable if done at the acute stage. I’m looking forward to keeping up to date with all your posts especially Canbedon as you seem very knowledgeable and informative in your post. Wishing everyone the strength to live the best way you can do xxx

[Max6]

Thank you Dr has just told me to take gabapentine 3 times a day along with paracetamol 4 times a day 🤔 little concerned awaiting physio.