Fibromyalgia driving me mad

[Chance22]

Hi , I am new to the group I have fibromyalgia and have had it for a year been and seen rheumatologist who has now discharged me back to gp, who I feel has no idea what to say or do with me. But what I do no is my symptoms are getting worse. So I was hoping someone on here will be able to give me some advice. I have alot of pain in my lower arms and legs with pins and needles and spasms. I also feel like I am walking on pebbles. My eyes feel slightly out of focus and I have really bad fatigue. I take lots of vits and pregabalin and co-codamal. Any advice will be great, I don't drink alcohol or energy drinks.

[saluhouse]

Hello Chance. Welcome. You have joined the club nobody wanted to join. But don’t panic - everyone here understands how you are feeling at this point in time.

Sadly lots of us have a GP who either doesn’t know about fibromyalgia or - even worse - doesn’t want to know about fibromyalgia.

My suggestion - for what it’s worth - is try to become your own fibromyalgia specialist. This is a good place to start.

So many fellow sufferers on here are experts. And they are happy to share their expertise in so many areas. They can help with advice on medication/diet/pacing/exercise and so much more.

So stay calm and keep an open mind. You can do a lot to help yourself.

Best wishes xxx

[Chance22 in reply to saluhouse]

HI Saluhouse,I was beginning to think like this, as I find because I look well I think that's all they see (a healthy person)and not how I am feeling as you can't see pain. I just don't know where to start with it all.

[Syren]

Hi there Chance22, sorry to hear about your pain, which vitamins do you take? xx

[LoneEra]

Sorry to hear this. Fibro can be especially rough when your GP isn’t helpful. Are you on any meds at all?

Saluhouse is right, there’s a lot of self care involved in managing fibro. Among them:

- Energy pacing

- Epsom salts baths

- Gentle stretches and/or exercise

- Clean eating and drinking plenty of water

- TENS machine

- Acupressure mat

- Mindfulness and/or absorbing hobbies

Not all of these help everyone. But if you would like more info on any of them, just ask! Xx

[saluhouse]

Hello Chance. I know all this seems overwhelming. But take things slowly. It’s a marathon not a sprint.

Is there maybe another GP you can see? Ideally one who accepts fibromyalgia is a real illness and you need ongoing support. That might be the best place to start.

But whatever happens - we have got your back!!

Xxx

[Alb2]

It might also be worth asking for a referral to a neurologist? I am under the care of both the rheumatologist and neurologist. People with peripheral neuropathy report a sensation of walking on stones.

[Makie-Uppie]

Sounds like you have done a body swap with me me, hope not I went nuts years ago. But seriously if you feel that the F word is really getting to you and you feel like doing something about it, ask for help. I have been very very low before I found this site. I survived those occasions more by accident than strength or design. I would offer more help but I'm not much use to anyone much (see) other than a mouth piece with an itchy finger. Lots of nice people here, all in the same boat, so take their advice.

[Pte82]

Chance22, look through these links to see how this information may apply to you in case you have a functional thiamine deficiency. Learn the pros and cons of thiamine hydrochloride, benfotiamine, TTFD and sulbutiamine. Magnesium is needed for thiamine activation. Consult with your health care provider before using any supplement.

eonutrition.co.uk/post/mega...

ncbi.nlm.nih.gov/pmc/articl...

[CheetieCat]

Hi chance, if you haven't already I would suggest having your VitD & B12 levels checked 🤗