Diagnosed by GP. Should I see specialist?

[chan620]

Hi! I was told by my GP last week he believes my symptoms are fibromyalgia, he has prescribed me 10mg amitryptiline (probably spelled that wrong!) which I haven’t started yet. I have been struggling with pain in legs, neck, back, shoulders, migraines and headache, tingling in hands and feet, extreme fatigue, trouble sleeping, along with many other symptoms, for a lot of years, on and off. I was diagnosed with Hashimotos 12 years ago and haven’t been right since then. I was at first relieved that I had a diagnosis at last, but wondering if I should be pushing for a referral to rheumatology? In case they’re missing something?

[Hazel_Angelstar Administrator FMA UK Staff]

If your gp has made diagnosis and there is nothing in tests to indicate another rheumatology condition - then there is likely no benefit from being referred to rheumatology (often they just confirm diagnosis and discharge you back to gp)

Of more benefit, may be a referral to pain management

[chan620 in reply to Hazel_Angelstar]

I just felt a little fobbed off to be honest, he initially wanted to diagnose restless leg syndrome, but I went in with a list of symptoms and he just said oh well it looks like fobromyalgis

[chan620 in reply to chan620]

fibromyalgia! Can’t type either 😂

[Delilahmy]

carry on investigating …. Asking questions… looking for ways to improve your symptoms ….. check vitamin levels vit d b12 try to follow thyroid group on here… b12 group too ..

I have had hypothyroid for many years and on t4 … now also on t3 … a huge difference on thiscombination. I also had fybro diagnosis in 2000. I looked at anything that caused chronic fatigue. Try dietary changes gluten free or dairy free. I trialed b12 injections and that has helped. This forum is sooooo beneficial and even though I am a nurse there is so much I have learnt here. Good luck. Watch Sally Patchlock (which I find I keep recommending as if I am on commission lol but it was so poignant for me)

youtu.be/OvMxJ6GRBNQ(Not working as expected?)

[chan620 in reply to Delilahmy]

Thank you for replying! I went gluten and dairy free a year ago, can’t say I feel any better apart from not having IBS anymore, but the other stuff hasn’t improved. I’ve started some supplements but my stomach doesn’t like a lot so have to take it steady. Did you get T3 through your dr? Mine won’t entertain the idea at all

[Delilahmy in reply to chan620]

went to consultant for t3…. It was a long wait as I’d been asking for it for a long time…. I’d previously had private NDT many years before but sadly the consultant passed away. Loved my time on NDT but this endo has given me t3 trial which is proving very helpful. Good luck

[hbanana23]

I would say try the amitryptline (you did spell it right) and see how you get on. If you don't think it's helping, you're entitled to ask for a second opinion.

[chan620 in reply to hbanana23]

thank you, I will try it, I’m just worried something is being missed. Not everything shows up on bloods but it’s all they seem to look at

[hbanana23 in reply to chan620]

I totally get you. I was ignored for years because my blood tests came back normal. I think you should definitely speak up as you know your body better than anyone.

[ANJI-UK]

if they say fibro, then its 99% fibro. Dont waste time with rheumatology it would have shown up in tests then your Dr refers you, Dont think you can see rheumatologist without a referral.

[chan620 in reply to ANJI-UK]

I was thinking it may be a neurological issue maybe

[klr31]

Have you checked your B12 levels, D, folate, ferritin and thyroid?

Karen

[chan620 in reply to klr31]

all ok and in range, but I’m aware some need to be higher than that to feel better. I’ve started supplements to see if they help. Thyroid levels have been stable for years now

[klr31 in reply to chan620]

As long as they are optimal. Low B12 can cause tingling.

Karen

[Judithdalston]

Snap with hypothyroidism and fibromyalgia ( and a number of other ailments too)…I did get to see a rheumatologist, who diagnosed what the Gp thought it was ( after having tests/scans to rule out anything else). But still got exactly same treatment 10 mg amitriptyline (x2 at night). I have a prescription for cocodamol 30/500 (4x2 day) too ( for much earlier major vertebrae problems), but only take 1 tablet of each at night to ‘take the edge off’. I see a very gentle spinal manipulator ( originally trained as a McTimoney chiropractor) every 6-8 weeks to help with pain that appears to radiate out of spine eg ribs and burning armpits! With lots of different ailments I find I have to ‘pick my fights’ with Gps to get referred to consultants…I would now say the wait, and results, to see rheumatologist wasn’t really worth it! It depends where you live as seems a postcode lottery if you get offered anything else like pain clinic, even hydrotherapy, but just for amitriptyline is it worth it ( did you ever see an endocrinologist on NHS)?As others have said try get your vits/ mins levels optimal, and don’t get Long Covid ( my current problem fibro on steroids!)

[chan620 in reply to Judithdalston]

ah I’m sorry you have a lot going on too! I also have a few other ailments which makes it even harder to know which is causing the current problems! I’ve started some supplements, I cut out gluten and dairy a year ago, hoped I would be feeling like a new woman by now!

[ajb1969]

Hi, I know this post was five months ago but I’ve just come across it now and read what you initially stated and I am exactly the same.

I have Hashimoto’s. I also get extremely painful widespread pain, sometimes my neck, both shoulders,legs, arms, feet. And lower back pain.

I’m also in a lot of pain at the moment with my feet and legs and my thyroid levels are always up and down. I think my bloods have only been stable for two years at the most. I still get all the horrible hypo symptoms.

I was diagnosed with fibromyalgia by a Gp years ago. And I’ve seen quite a few rheumatologists, to rule it out.

One rheumatologist said he didn’t believe in fibromyalgia and he said doctors only tell you that because they haven’t got a clue what’s wrong with you.

Another rheumatologist didn’t say anything helpful and the next rheumatologist stated that she didn’t think I had fibromyalgia.

After reading quite a lot on hypothyroidism and Hashimoto’s and talking to others, you can get widespread joint pain with hypothyroidism, so it’s my belief that it maybe the underactive thyroid that’s causing all my joint pain.

I’m taking folic acid supplements and my iron is quite low and I’ve also got Adenomyosis and that’s also possibly causing a lot of inflammation, so it could be this also causing all my pain. And you state you have another illness so can it possibly be that?

Id definitely see a rheumatologist and keep asking gp for a referral to see a decent rheumatologist. I kept asking relentlessly.

I wouldn’t give up and definitely keep trying to see a rheumatologist, to have everything ruled out because initially 10 years ago, I thought I might have rheumatoid arthritis but that’s been ruled out now.

Don’t just listen to a GP they’re not experts, see a professional specialist with regards to the fibromyalgia. Definitely if you haven’t already, take care and good luck 🤞