Hi everyone, I'm new to this site but was looking for somewhere I could get some advice. I'm 41 & I've had symptoms of fibromyalgia for as long as I can remember (it started in my neck & shoulders in my early 20s). At the start of this year I decided enough was enough as I had been struggling quite a bit. I seen my gp quite a few times & He fobbed me off with Meloxicam 7.5mg & Methocarbamol 750mg. He never mentioned fibromyalgia & either did I tbh. He finally said he would refer me to a rheumatologist at start of March this year but never said why. I've now found out that I'm on a waiting list of 19+ months to see a rheumatologist. I'm getting worse & feel that my gp is fobbing me off & I don't know whether to go back to him or not...would it be worthwhile going private. I'm only 41 but I feel more like 81.
I appreciate any advice as I'm struggling big time atm. T
When I first started having symptoms last September my gp referred me to a rheumatologist. Was told there was only a month wait. At end of October rung again only to find there was a 4 month wait so I went privately. Saw consultant beginning of December then again at end of Jan on nhs. I would definitely go privately to see a rheumatologist sooner rather than later. I took a letter from my gp to the consultant.
Thank you for your reply. My gp has only referred me as a general case, I honestly didn't think I'd have that long to wait. I think I may have to go private, I've gotten worse since before Christmas...dont think I could take much more pain. T
Hi Tantagb, yes your doctor is fobbing you off as he can have blood tests done etc to rule out other conditions, and doctors can now diagnose fibromyalgia as my sister went to her gp and said it runs in the family, had bloods tests, then got the diagnosis, if your doctor says he isn’t familiar with fibromyalgia then ask him to read up on it! hope this helps, NanaT
Hi NanaT, he took bloods 3 times & my liver function was low on 2 occasions & He just said I had an infection somewhere which was causing my joint pain...i had to remind him I've had issues for a very long time not just recently. He has never once mentioned fibromyalgia...it was my friend who is a nurse & also a fibro sufferer who mentioned in to me over 7 years ago. T
Hi, I have thought about seeing another doctor in our practice but we are a small community and I know I shouldn't but I would feel guilty going to someone else but I know I should...either that or go private. T
The NHS has a Referral to Treatment target of 18 weeks. If your local hospital cannot offer you an appointment within that timescale, you have the right to ask your Clinical Commissioning Group (CCG) to sort something out for you. I did this and a Dermatology appointment magically appeared that they previously claimed was not available. You can find out more here
Hi thank you for this...i never knew about this. I had to ring out of hours this evening to see if I could get stronger pain relief & I explained to the doc on call that I have been referred but waiting list was 19mths & He actually said id be lucky to be called within that time...he said N.Ireland is awful for waiting times atm. I'll definitely be looking into this....many thanks. T
I did not realise that you are in Northern Ireland. Health is devolved so the NHS England regime does not apply. NI has its own targets.
Hi Tany Have you been deigned with fibromyalgia It in a lot of cases affects the legs . Then moves up your body You say it’s affecting your back Ant other area of pain at All ? Can you look after your self cook etc ‘ get up the stars Gft in out of bed?
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Hi, thank you for your reply. I haven't been diagnosed yet...have been referred to a rheumatologist but the waiting list is 19mths atm. I can't walk first thing in the morning, my feet & legs are very sore & tight. My hands, neck & shoulders are also bad in the mornings. This sometimes eases off but i do have quite a few days where I feel I've been hit by a bus. I feel that everyday I have pain somewhere. I have restless legs at night which keep me up then I'm a wreck the next day...vicious circle. I also get a redness that comes over my face...a bit like sunburn. It's getting to the point where there's days I struggle to even get out of bed. It seriously gets me down. T
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Tanyagb I got full blown fibro I know what your going through , I feel helpless but there are things you can do do to help your self All what you prescribed Iv been through Tanyagb you CAN NOT WAIT 19 months you will have to right direct to the hospital , Find the name of the doctor your seeing and contact him direct You got to BE BRAVE will send you PM OK
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Thank you
I've searched online for waiting time targets for N.I and they don't seem keen to publish them ! I can find reports showing how long patients waited but not the actual targets.
There should be a PALS team at your hospital who can tell you. 19 months is totally unacceptable. I was told I had an 8 month wait ( excuses, excuses when I questioned the 18 week maximum wait)
I made a private appointment, sent copies of all my blood test results in advance of the appointment. The dr diagnosed fibro and wrote to my GP recommending various meds.
Don't know how you'd feel about changing your GP as a guess at " you must have an infection that's giving you pain" after years of pain doesn't sound like an efficient dr to me.
A private consultation will give you time to ask questions. I'd suggest writing them down and taking them with you as I forgot to ask about half of mine.
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I get the impression from my doctor that he is reluctant to actually mention Fibromyalgia...even my pharmacist is convinced I have it. The waiting times are bad here atm. My brother was waiting to see a consultant about his back & was told the waiting list was 2+yrs...he went private & was seen within 3 days...money talks.
I just need to make my doctor realise how bad I feel. I'll definitely will be writing things down cause I always forget half the things I wanted to say in the first place. Tbh though I think my only option is to go private. T
keep seeing your GP regularly, plus write then practice manager, get a second opinion and involve regulator and legal bodies if need be. You must advocate loudly for yourself. Best wishes (I'm in a similar boat)
I think that's the key. I had been seeing the doctors in our practice for all my symptoms separately for yrs & not one of them has ever picked up on it. I just need to keep torturing them til I'm heard. T
I don't know where you live, but you can look up waiting times for hospitals that you feel you could travel too on the NHS website nhs.uk/NHSEngland/appointme..., for example I live in Essex and the waiting time to see a rheumatologist was 11 months at my local hospital, but if I went to Guy's hospital in London the wait was one month, so I asked my GP to select that hospital on the choose and book form and I went there - just a thought. Good luck.
Hi thank you for replying. I'm from N.Ireland & the waiting times are unreal & the system so different. When we are referred it's either to our local hospital (which never has the specialists) or to the next major hospital...unfortunately we don't get the choice to pick where we can go. T
Hya there duc it was the same for me at first my doc kept giving me med which half the time was no good I kept on and on as my pains were getting worst in the end he sent a letter to the hospital had to wait ages a lovely lady doctor told me I had fibro which ta was a start I saw another doc to this one was better but more meds again see if you can change yr doctor find someone that can really help you ok duc uv got to keep pushing them take care duc x
It seems to be a condition that doctors are reluctant to actually mention. For along time he kept telling me I've an infection, then it was a virus & kept handing out medication.
I was going to see if I could have an appointment with another doc from our practice but we are a small community & I know I shouldn't but I would feel guilty going to someone else about it. I know I need to see someone else or go private. T
I finally have an appointment with a rheumatologist on Saturday morning! I went to my GP & told him I couldn't go on much longer with this pain, I did break down which I knew I had been bottling it all up for so long. The waiting list is currently 19mths & he said even if he made an urgent referral he could only save me a month or two & my only option is to go private...which I have. My GP also finally said he thinks it's fibromyalgia...I've been waiting for him to say this for so long...just for him to confirm it wasn't all in my head. I have taken myself off all the medication that my gp has prescribed me as I want the consultant to see what I'm like without being drugged up. Fingers crossed that the consultant diagnoses something...just to have something confirmed would be a wait of my shoulders.
Please try milk Thistle. You can get it from Holland and Harrett. It was given to me from above, if you know what I mean. I have been taking it for years now and must say, it works well. Try 3 capsules daily and give it a few days to get into your system before you notice anything. Good luck
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