How long did it take u guys to be diagnosed w... - Pain Concern

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How long did it take u guys to be diagnosed with fibromaralgia?

kagz profile image
kagz
23 Replies

I'm currently having lots of blood tests done because I'm having constant pain in lower back, shooting pains down leg and various other pain. I constantly pull muscles in my back ,I have had an MRI which was normal, nerve blocker in back didn't work, had lots of different medication an now the doc has mentioned fibro, but not diagnosed it yet and has prescribed gabapentanol, I'm already taking cocodamol 8 a day and now the gabapentanol which I haven't started yet, I'm at my wits end I've got a toddle and work part time and coming to the point of giving up work.

Thanks for reading xx

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kagz
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23 Replies
Trulysad-76 profile image
Trulysad-76

It's a long process to be diagnosed with any illness unfortunately. On one hand it's good that your MRI has come back normal but I am sorry to hear it might be fibromyalgia. I am not sure how they test for this but I hope you get some sort of diagnosis and then the help you need.

I will say this, there is no magic cure but it can be managed. The pain clinic is a good place as they are there to help with pain and understand a little more than a GP.

I do hope you get sorted x

kagz profile image
kagz in reply to Trulysad-76

I was actually under the pain clinic for the MRI and nerve blockers because nothing came from them he basically said there is nothing more he cud do for me except physio which Ive have in the past, I have just had to pester my doctor coz of the pain, I'm anemic and something has come up on blood tests that he hasn't seen b4 something to do with my b12 and my stomach, so still in the dark really but waiting to have more bloods done.

Trulysad-76 profile image
Trulysad-76 in reply to kagz

Oh my, bless you. I take an overload of B12 because I have CFS and I have to say it does help. Unfortunately though my doctors refuse to give it to me, so I can't have the injections but I take a slow release tablet that certainly takes some of the ache. The ache I feel is like having a bad case of flu so you can imagine how I feel especially when I am relapsing.

I really hope they don't make you wait for to long xx

kagz profile image
kagz in reply to Trulysad-76

Ano me too ,thank you for replying ,wots cfs?

Trulysad-76 profile image
Trulysad-76 in reply to kagz

CFS is chronic fatigue syndrome. I lost my mum a few years a go, just before she died I got food poisoning and never recovered. At the time I thought everything was due to my mum dying. She was very ill for a long time so I just thought I was exhausted emotionally and physically from it all. I decided to go to the doctor and had tests done and then CFS came up. They sent me to a specialist hospital who diagnosed me. It was a huge shock to the system and has taken time to get my head round it. Mostly manageable but I do relapse and it's horrible no matter what I do x

kagz profile image
kagz in reply to Trulysad-76

Oh right, sorry to hear about ur mum did it show up on a blood test x

Trulysad-76 profile image
Trulysad-76 in reply to kagz

No unfortunately it didn't and doesn't. There is a criteria that you meet and is genuinely debilitating and you have to of not been able to recover from a bad illness. Basically there isn't so far a test for CFS, it is recognised by NICE but it's still not known enough. Some GPs don't believe in it x

Heltadelta profile image
Heltadelta in reply to Trulysad-76

I too feel as though I have a bad dose of flu when the fibromyalgia is bad.

Trulysad-76 profile image
Trulysad-76 in reply to Heltadelta

From what understand the symptoms are near enough the same x

SusieJo1948 profile image
SusieJo1948

Kagz It took about three years,doing that time the pain kept getting worse and nobody would believe me. No Dr's.finally I changed Dr's and in 1998 I was diagnosed with it. Find a Dr who sees a lot of people with it. Let me know how things are going. Susiejo1948

Joanne1972 profile image
Joanne1972

I think it took around 4 years for me to get diagnosed. There's a few things to eliminate first so a lot of that time waiting for those referrals n tests n results. I eventually was referred to rheumatology who diagnosed fibromyalgia, oh fibro fog making me forget the name of the thing I'm trying to think of....they pressed on certain tender points in body, you need a certain amount to hurt to get diagnosed with fibromyalgia.....plus other past history symptoms/criteria. I'd look up fibro n see how many of the other symptoms you have other than pain.

The chiropractor I see also knows how to test for fibromyalgia, whilst you are waiting for NHS to diagnose you, it could be worthwhile having a private chiropractor appointment, even if you don't have fibromyalgia he could spot what is causing your back pain.i found out I needed orthotics (not expensive ones) and my pelvis was rotated, since treatment my back pain improved. Worth a try.

Good luck, hope you don't have fibro.

Jo

kagz profile image
kagz in reply to Joanne1972

Thanks ,was actually thinking of seeing a chiropractor, so I will defo do so now

Heltadelta profile image
Heltadelta in reply to Joanne1972

OMG I know all about fibro fog. At times I think I am losing my mind, I struggle to recall things. A friend who has fibro much worse than me has terrible problems with her legs, they go all wobbly, we call it her Elvis Presley dance as her legs wobble like his used to when he was dancing. She also falls a lot. I have only fallen a few times, but my hands have started jerking and I have thrown cups, plates etc to the floor. It's a horrible illness.

UFE1606 profile image
UFE1606 in reply to Heltadelta

Talking about fibro fog, the other day I was at the shops, trying this jacket on, put my bag on the side , completely forgot I had my bag with me.. and left it ! - It was only until I came to pay for something else that I realized I didn't have it with me! Never felt so stupid in my life! You can imagine the mental breakdown I had!!! Had to call security, I was in tears...I had everything inside my bag, mobile, purse...it was horrible....

To my surprise after two days had a note through the letter box , from the shop to say they tried to deliver my bag!!! Can you believe it? ! I was so lucky after all....! Anyway at the end , I have managed to recover my bag nothing was missing, even my purse with a £20 note !!! - Some lucky star!, and ever since , I do not go into any shop with my bag ( only my purse of course !) .

Take care... x

Heltadelta profile image
Heltadelta

Hi. I was diagnosed with Fibromyalgia a few months ago. It only took a while to be diagnosed. I went to my GP with terrible neck and shoulder spasms with pain radiating across the top half of my body. I now take Robaxin as needed and every three months have an injection, this does help someway to relieving the pain.

I'm a lot older than you and don't have any toddlers, so I don't know how you manage. The fibromyalgia was diagnosed on top of a chronic back issue and severe osteoarthritis, so I am in a lot of pain all the time. My GP isn't great though and I often feel I am being a pest.

kagz profile image
kagz in reply to Heltadelta

Ye well I feel like a pest too at the moment, and always moaning about pain an pulling muscles all the time I'm like an old woman

Heltadelta profile image
Heltadelta

You are not a pest at all. You are in pain Kagz and you are the only person who knows how you feel. Don't give up.

kagz profile image
kagz in reply to Heltadelta

It's really hard isn't it not to, it's depressing, feeling like it's in ur head, or the doctor making you feel like that, do they really think that you want to be on strong killers every day and feeling so exhausted all the time ,an going the doctors every few wks, if I'm not in work or looking after my toddler I'm in the bloody doctors, sorry for the rant 😞

Specy2 profile image
Specy2 in reply to kagz

I found an article from the USA and posted it on this site I hope that it might one day be a cure for all the pain headaches dizzy spells , it is so very difficult living with a hidden illness and looking after a toddler as well.

I hope that you get some relief soon

Specy2 profile image
Specy2

Hi there Kags I was diagnosed by my own Dr at the time he then sent me to the rheumatologist for it to be confirmed. It was a relief in one sense but not in another. If you do your research on the FMS.UK website they have lots of information that might help.. they also discovered thyroid problems, I also have raynauds which isn't good living in a cold climate.

I had a spinal fusion done when I was 35 yrs old, that is what triggered my FMS, my pain meds are Zydol XL a slow release tablet, gabapentin 500mg , dehydrocodiene , adalat for raynauds, thyroxine 75mg , betahistine for my ears.

Having a bad flare up this past two days but loathing going to the Drs, I have ankylosis in my neck.

I remember when I ran a support group for FMS/CFS we always said that if we didn't smile or laugh life would be unbearable. We FMS SUFFERERS HAVE A GREAT SENSE OF HUMOUR , we have to because going back and forth to the hospitals where they couldn't find anything was very distressing

I wish you all the very best on your FMS journey, they say it isn't genetic I would disagree I think my mother had FMS but was never diagnosed.

❤️❤️

kagz profile image
kagz in reply to Specy2

I had a thyroidectomy 12 yrs ago so on thyroxine for life had 2 laparoscopys for endometriosis and have been suffering with my bad for a long time it's only now I'm feeling aching all over, have sciatica ,pulling muscles an generally feeling light headed, different foot paths make me dizzy an suffer with vertigo and feel sometimes I'm gonna fall over. I really don't understand what's going on, Ive had more bloods done to rule out anything, but I'm sure it's fibro, just waiting for doc to say so.

sidsue profile image
sidsue in reply to Specy2

my mam ans dad and myself have fibromyalgia..

Kel-uk123 profile image
Kel-uk123

Hi all,

I was diagnosed with fibromyalgia 10 years ago and have managed to get on by just taking Amitriptyline at night. However just over a year ago I had a Uterine Artery Embolization to get rid of very large fibroid. Unfortunately it has left me with chronic sciatica in both buttocks and hips. I now struggle to sit down and sleeping is nearly impossible. I have tried all sorts from chiropractor physio and deep tissue massage. I now have a referral to the musculoskeletal team. My doctor thinks that some of my pain is my fibromyalgia flaring up which can happen after an operation. I have been to some very dark places this past year and I am hoping that I am able to find some relief from the constant pain.

I hope we all do 💜

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