Hi New here

[james_alex]

I am new here; I have suffered pain in my knees since my mid teens and also pains all over my body, now at 44 years old i am at a loss as to where to go, I recently asked my gp if it could be fybromyalgia and she said "yeah if you like, that's just what they are calling ME these days" I am now researching finding a private Dr as it seems, as per usual i will have to sort this out myself. I silently suffered from deppression for over 20 years until i started telling people this year. I don't even know if i have fybromyalgia. I have never had any scans.

[Coffeefan]

Hi, you need to keep on with the doctor, there is no actual test but more so eliminating other illnesses. I had blood tests to rule out inflammation and filled out questionnaires about my symptoms and the severity of them, how long you've experienced them etc. Hope you get some answers soon

[Casasue in reply to Coffeefan]

thanks for that i was told few years back re blood test and sleep issues its deviated spatum nose effects breathing as muscles press on main veins not enough oxygen

[Coffeefan in reply to Casasue]

I've always suffered with my sinuses so was used to headaches and developed migraines in my 20's which got worse in my 30's, about 15 to 20 a month at times. Then back pain started, then hip and random other places. Thought they were separate issues at first. When I finally had enough I wrote it all down as you don't experience every symptom all the time usually so didn't want to forget something as my mind goes blank, they said sounds like fibro as I've suffered for a while and sent me for blood tests to rule other stuff out. It's a long road and diagnosis is only the beginning

[Cat00 in reply to Coffeefan]

I've had chronic migraines since my 20s always thought my fibro came from that, that and trauma in my teens.

[Coffeefan in reply to Cat00]

Sucks doesn't it x

[Cat00 in reply to Coffeefan]

Yuuuuup!

[Casasue]

Know the feeling of burning knees and fatigue infact I have one day out then exhausted for 2 days after do you have issues with all your joints

[james_alex]

Thank you. I'm thinking of going above my gp and seeing a rheumatologist privately. The pain in my knees is constant, if I'm a wake I'm in pain. I had lots of different pain killers in my late teens and now my stomach cant handle them so I dont take any. Not that I have been offered any in the last 20 years. I dont have the mental energy to keep going to gp's and being shot down.

[JayCeon in reply to james_alex]

Parallel to praps getting a clearer diagnosis by going private, which I understand, it seems you need to avoid pain killers anyway. Even before you're sure about the diagnosis you could start working on analyzing symptoms and their triggers, maybe with the help of good gentle physios (osteopaths, acupressurists) or work thru youtube videos, they often help by showing movements that help you find out what's going on and then the specific exercises that might help. Docs hardly ever do this. Exercises, stretches & acupressure. Also looking at supps instead of meds for pain etc. - see several supp threads of late (Jan/Feb).

Your doc may have confused ME with CFS: "ME" has been used since the 50s, CFS since the 80s for roughly the same thing. FM symptoms are similar, but pain is primary, rather than fatigue, and that term has been used since the 70s for what used to be called fibrositis etc. ME & FM are considered by docs and patients to be related, potentially co-morbid, but not the same. Getting my local pains down to zero has left me with a "fatigue" which develops to a severe deep Ache as soon as I do too much. That made me "pinch" supps which are used more for ME/CFS than FM, so the (self-?)"diagnosis" - i.e. defining what your primary symptoms seem to be etc. - can help.

[MaggieSylvie in reply to JayCeon]

Surprising how ignorant GPs can be. I remember reading about FM being called fibrositis (my gran had it) and when I mentioned it to my GP he said he'd never heard about it, and that was many years ago, to the GP who diagnosed me.

[Coffeefan in reply to james_alex]

I wrote all my symptoms down, the pain, where I experience it, the fatigue, low moods, pins and needles, cramping, stiffness, memory problems, random bee sting sensations, no sleep etc because I was seeing them about certain things separately or not at all, I didn't know it was all tied together and to be honest thought I was going mad, sometimes I still do. Maybe it'll help your doctor understand

[PenelopeClearwater]

It’s bad that your GP is telling you the wrong thing about CFS and Fibro being the same thing 🤦

I recommend asking for a referral to a rheumatologist. And perhaps a referral to the pain clinic - it was a pain clinic consultant who told me I have Fibro and I’ve since done loads of research and found I have every symptom going!

Unfortunately, there is no cut and dry test for fibro, so have a look at the NHS page and other research from medical journals etc, to see if your symptoms tally.

I know from my own experiences with endometriosis and chronic pain that GP’s will encourage you to just get on with it, so don’t take no for an answer.

Well done for speaking about your depression - again, I know from experience how hard that is and sharing your condition is a brave step. Remember it is never a sign of weakness to ask for help - it’s a sign of strength 💙

[VDL55]

Hi James_Alex, what a terrible situation to be in, I can totally empathise with you.

Your GP is, as others have said, wrong by saying that ME and fibromyalgia are the same, they're not!

Fibrositis became fibromyalgia

And

ME became CFS

Unfortunately most GP's don't know enough about chronic pain related conditions. I'd suffered for years and gone backwards and forwards to see the doctor only to be told, when I was younger that it was growing pains - even in my early 20's!! Then as I got older, in my 40's (🙄), that as you get older our body's slow down and we ache!

One day I saw a different doctor who said that I have fibromyalgia and she would refer me to the specialist rheumatologist at the hospital. I honestly couldn't have kissed her 😘 She admitted not knowing enough about the condition, so I went onto the fibromyalgia website and requested their information pack for doctors to be sent to her. She thought that was very helpful and gave her an opportunity to learn more. Sadly this GP has left our practice.

I feel lucky insofar as I have had a great rheumatology consultant, he's now retired, who has a brilliant understanding of fibromyalgia. I'm hoping that his successor is as good.

The important thing for you to do is to research your area for consultants in rheumatology and then those who have an interest in fibromyalgia. Even if you want to go privately I believe you will still need a referral letter from your own GP, so the fact that he/she has said, in a peculiar way I must admit 🙄, that you can have it, it will be on your medical records - perfect!

Whichever way you go I wish you lots of luck in getting the correct diagnosis and help to start feeling even a little better 😊 Val 😊