how can i find out if i have FMS? - Fibromyalgia Acti...

Fibromyalgia Action UK

59,419 members66,472 posts

how can i find out if i have FMS?

secretldy profile image
11 Replies

i was diagnosed with ME.but i have had another doctor tell me i have the pain points of someone that has FMS, but my doctor will not send me to be checked

Written by
secretldy profile image
secretldy
To view profiles and participate in discussions please or .
11 Replies
Butterfly54 profile image
Butterfly54

Hi Secretldy,Did the doctor that told you you have the pain points belong to the same surgery as the one who won`t send you to be checked.I am not sure about this but I think if you ask for a referal to a rheumatologist you have to be given one.No doubt others will give you answers on here.And I wish you luck.hugs Butterfly xxxx

secretldy profile image
secretldy

the doctor that told me i had the pain points was the doctor sent by the DLA.

julieru profile image
julieru

I asked to be referred to Dr Vinod Patel at the George Eliot Hospital in Nuneaton. Dont know where you are from, but he is one of the leading ME specialists in the UK. I have got ME, started getting pain I didnt understand, was told by my Gp that because she didnt know what it was I would just have to 'live with it'. Because I asked for a specific referal I dont think they can refuse - she didnt like it, but referred me anyway. 20 minutes with Dr Patel, I was diagnosed with fibro, given gabapentin, a plan for being put on the drug, and if that didnt work, plan B and plan C in my pocket. brilliant doctor. Ask to be sent to him, I cant sing his praises highly enough

secretldy profile image
secretldy

i did ask and got told it would cost to much to send me, plus ME and FMS cross over anyway.

Butterfly54 profile image
Butterfly54

That is absolute piffle on behalf of a very ignorant doctor.you actually have a right to put in a complaint to the practice manager.And your health should not be put down to cost.I would be blazing if a doctor spoke to me like that.can I be rude hun and ask how old you are.love from a very vexed butterfly xxx

secretldy profile image
secretldy

i'm 50 this year, it took me a long time to be diagnosed with ME. The doctor i had before this one told me i had ME and when i asked what it was he told me to look it up on the computer, so i didn't do much about it, i just tried to keep on working. then one day i just did not have the energy to get out of bed, i slept for 13 years a day, and when i was awake i just did not have the energy to do anything, so my sister that has FMS came down to look after me, and it took me over 6 months to be able to do sort of normal things. Then my doctor retired and this doctor came along and every time i felt really bad i would ask if it was my ME and he would tell me that it was a flu type illness, so we went on asking is this to do with the ME, and i always got flu related illness. then one day he asked who had diagnosed me with ME and i told him the old doctor, and i was told that that doctor was very grey about it. well i have been a shop steward for a union and i know what grey means. so this doctor arranged for me to see the ME clinic, which took over a year to get to see. thats when i was told ME, i had to go to the clinic every other week, and they would give me a booklet to read, which did not seem a good idea as i have a short term memory loss, so i read the booklet and would forget what was a the start, was didn't do much. to be honest i feel like i have been told that its ME so get on with it. the only problem is, i have a lot more things wrong with me now, and i still have to try and fight to get some help of the DLA and the doctors.

your not the only person that is vexed matey.

Butterfly54 profile image
Butterfly54

Thats a really rotten time youv`e had, personaly would change doctors,again that is a right.Dont ask the if it`s ME let them find out.I hope I haven`t offended you in anyway that was not my meaning by vexed I just get so sick jumped up doctors who cant do thier jobs properly.((((((((hugs))))))) and good luck butterfly xx

secretldy profile image
secretldy

you have not affended at all butterfly. you have not said anything out of line. i keep saying i'm going to change doctors, but stay in the same surgery, but never get around to it. still finding out medical problems. the doctor has pushed for me to see the memory clinic. which is good, i will just have to push a bit more.

problem is, sometimes you have to fight, but don't have the energy to fight.

thank you, for your advice. will keep you up to date.

thank you some much for the hugs, sending them back (((((hugs))))). its nice to know there is someone out there that knows how you feel. i feel like i'm on my own and not even the docs are going to help.

fighting the DLA as well, as i had a doctor from them that did a good report when at my house, but it has changed when it got to them, its a report on one of my illnesses, but it should be all.

secretldy xxx

Butterfly54 profile image
Butterfly54

Hi secretldy,Well hun we all know how you feel and bye now I exspect you have had a good look round this wonderful site and found as I did the ammount of peaople fighting for thier rights.We should`nt have to it`s as plain as the nosse on your face when trying to talk to doctors that there is something wrong.It` so hard I know Hun but light up that fire if you can from when you were a shop steward(you neede balls then)and change doctors.Gentle hugs Butterfly 54 let me know how you get hun xxx:-)

kraftyk8 profile image
kraftyk8

Oh dear Oh deary me, deja vu. Most of us will appreciate how ticked off you must be, but to be honest, going in guns blazing rarely works. It just puts peoples backs up before you even get started. (I used to be a complaints manager, Can you tell :) The softly softly catchee monkee approach works much better. My advice is to make another appointment at your surgery, but ask the receptionist which GP has a special interest or specialist knowledge of arthritis. Not because you have arthritis but because they will be the most like to have any knowledge of FM and they are the fastest route to a Rheumatologist, but don't tell them that. If there isn't then ask for an appointment with anyone but your usual . When you go and see them tell them all your symtoms and that the DLA doctor suggested that you may have FM instead of, or as well as ME. Tell them the other GP was talking about referring you to a Memory Clinic (a new one on me) but that as memory loss, or as we all call it fibro fog is a common symptom of FM, wouldn't be a better use of their resources to send you to a Rheumatologist to get a definitive diagnosis. Don't mention that the first GP wouldn't. If they still say 'no', ask them straight out if they are refusing to refer you, as that often does the trick. If the say they are refusing, then tell them you want it recorded in your notes that they have refused to refer you to a Rheumatologist and ask that they do it now, so that you are sure it has been done. Unfortunately, it is a widely believed misconception that we have rights where this is concerned, we don't. However, if you are refused, then you pay privately to see a Rheumatologist and he gives you a definitive diagnosis of FM, that could be construed as negligence on the GP's part, which is why you need to make sure the refusal is in your notes and why it usually gets you the referral. If all fails, go home and write a letter addressed to The Senior Practice GP, c/o The Practice Manager. If you would like any help with that, send me a message. Good luck

secretldy profile image
secretldy

thank you so much i will see what happens, i do know how to get to see another doctor, as i know what days my doctor has off.loli actually think that my doctor is one of the don't beleive in me doctors. what i was thinking of doing is taking the note from the DLA doctor and letting the doctor read it, as he points out that the pain points were positive for FMS. just wish the DLA doctor was as good when it came to eriting about the pain. but you can't ask for a miracle can you? lol

You may also like...

how do i find out about benefits

about losing my home with this bedroom tax. i have had stairlift and walkin shower put in through...

FMS Diagnosis, Can you help me please.

I have had FMS for many years now, but I was only told about this illness just a few years ago but...

Hi everyone cant bileve it I have just had a appeal for dla and they refused me. How can they do this to someone who finds it hard to walk.

Do no how much more I can take 😢😢😢😢😢😢

with it, doctor's pain management keep saying the same thing and I fed up of seeing my doctor most...

How do you cope with FMS

How much pain do you enjure before you call the doctor? I weaned myself off all pain pills 6 months