Does anyone know of anything that can help with this constant feeling of inflammation?

[Alanna012]

I broke down several times this week because of the pain. But the thing for me that makes it really unbearable at times is this constant feverish state I get in, the moment I do the slightest strenuous thing. I feel inflamed, and my temperature is elevated, my skin is hot and red, my head pounds and I even dread going to pass urine it is really hot and burns. I read that there's no consensus in the medical field that fibromyalgia suffers experience inflammation because it doesnt show up in tests the way it does if you have Arthritis say. But this sensation of hot soreness is really getting me down, even if I can push through the pain, the feverish feeling eventually gets too much sometimes.

I absolutely hated our indian summer last year. I nearly fainted in the shops twice from the heat. Because I already had a constant elevated temperature I had to stay indoors for weeks at a time.

I was on instagram last year and someone said in America the doctors there give steroids to cut down the severity of flares and inflammation. This lady told me that although they are not completely effective they do help take the edge off, and her Rheumo gives her a back up supply to start taking the second she feels a flare approaching.

Does anyone have this here? Or any tips? My doctors know next to nothing about Fibro. They just keep talking about pain. Its not just pain. It does seem they get better help in the States and Canada. Im already dreading the summer.

[M0AL61 Moderator Volunteer]

Hi,

I would suggest you either see a different GP in your surgery, or think about changing GP's. You need a GP who will be supportive. x

[Alanna012 in reply to M0AL61]

Thanks I just felt frustrated today and tired of this constant hot feeling. I think finding a good doctor woukd frankly require paying. I've really not got confidence in the NHS anymore.

[Anniebl24]

I have recently had a change of rheumatologist and already feel better supported. See if you can get yourself a second opinion.

[Alanna012 in reply to Anniebl24]

Thanks Annie. Where in the country are you based? Im in London and I have been referred to Rheumo twice. First time they didn't pick up on fibromyalgia, I had pain and neuralgia, and swelling sensation in hands feet, but in the early days it kept coming and going. They said its probably due to excercising too hard despite me telling them I only jogged 1/2 an hour 3 times a week.

Fast forward 3 years I am really suffering. I have to beg the doctor to refer me back to Rheumo. She herself warned me it would be a waste of time, So even the doctor knows. Waited over 6 months for appointment got hopeful I'd get some help and was helped zero. Was in and out in 10 mins and that included being weighed and blood pressure taken. Didn't listen to anything I had to say, I was not an individual just patient no.1022. Asked her can you help me with this inflamed hot feeling? What is causing it? Answer: Try to relax more!! I asked her can my thyroid illness be having an effect? Her response was 'no evidence for that' she smiled and said a lot of fibro sufferes develop a 'sort of' M.E very casually. Then didn't elaborate further.

She ended by saying "Fibromyalgia is very common, a lot of people have it in varying degrees I've heard it all before and will hear it with the patient that comes after you. And also you dont need to ever come back and see us again."

So not a great deal of confidence left I'm afraid😂

[KnackeredKaty]

If your GP has been treating your fibro and you feel that they don't know anything demand a referral to a rheumatologist. They can give you hydrocortisone injections (steroids) to reduce inflammation. I had it and had forgotten how it felt to feel well!!!! For me the relief only lasted 3 weeks but for some people it works long term. They can prescribe appropriate anti-inflammatories aswell which should help with your symptoms. Good luck.

[Alanna012 in reply to KnackeredKaty]

Thanks for the reply I hadn't heard of these thanks Katy! (I used Katy cause it feels weird to type 'thanks Knackered" lol!😁)

This has not been offered to me before by Rheumo honestly is it too much to expect someone to point out all the available treatment options at an appointment? I am really finding the standard of care just lacking and frustrating. Now I'm forced to have to ask my doctor about it and she'll likely say its not her jurisdiction and she will not refer me a third time. Honestly I am really fed up with it all.

[KnackeredKaty]

Hi Alanna, you made me laugh out loud about my name.🤣🤣 Apologies for not replying until now, I've had a non-stop week. I am a nurse and I've left the NHS as everyone is so apathetic and useless about everything, and especially useless about fibro. I have found that it is best to weaponise yourself with information and don't budge from the doctors office until you have asked all the questions you want to ask. I have argued the point with so many doctors about issues with my health over 40 years and every time I have been right about either a diagnosis or "something not right with me." If you're not tough with doctors they do what they like. I had epilepsy as a child, and my mum had to insist that I had epilepsy and bully doctors to listen to her, and she was right!! Doctor's bullish attitudes have not changed since the 60's. Many don't like being told instead of asked, but I have found that I often, not always, get answers. The rheumatologist told me before discharging me that I should wean myself off Gabapentin and only take it when I have a flare. I have improved but I'm waiting for the double whammy of pain and exhaustion to return. I went to a physio group session last year to "educate" me about fibro. They informed the group that in Doncaster there are 6000 people with fibro!!!! 6000!!!!! No-one is investigating why!!!!