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New gp, suspect he doesn't believe in Fibromyalgia

Posted , 5 users are following.

shelagh6
shelagh6

Hi,

I had my first consultation with my new gp yesterday. I booked the appointment because I keep falling over, also because my hearing feels odd. I said I thought they might be linked, he checked my ears and referred me to ENT, he said he didn't think they were linked. He then asked why I am on so many meds, I explained about the fm, arthritis, prolapsed discs and spondylitis. He said "hmmmm", I said the rheumatologist prescribed them all, he raised his eyebrows but said nothing. He has ordered full bloods and an ECG, I get those on Monday, but before I left he mentioned the meds being the problem again. I had a gp years ago who didn't believe in fm, her words were, "I don't believe there is any such thing and if there is it's my understanding it burns out after ten years", I had a difficult time with that practice and don't think I can go through all that again, the whole thing is making me really worried. Any suggestions on how to deal with it would be welcome. I should say I've thought of changing practices but I live in the middle of nowhere so it isn't an option. 

1 like, 20 replies

20 Replies

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  • JulieBadger
    JulieBadger shelagh6

    Posted

    If only that first doctor was right I would of only suffered for 10 years rather than the 22 years. Lack of balance and middle ear goes together.  Part of the Fibro diagnosis is to rule out everything else so if your bloods haven't been done before then him asking for them I believe is correct.  I personally rang the reception of my doctors and asked if any of the doctors specialise in Fibromyalgia.  I am now under that doctor who understands it more and really cares. I see her once a month and we see if the meds need tweeking.  Good doctor support is better. Each doctor can't specialise in everything. Good luckx 
    • shelagh6
      shelagh6 JulieBadger

      Posted

      Hi Julie, I've had so many blood tests I'm surprised I'm not anaemic, it seems the rheumatologist and my wonderful old gp were forever ordering them. I suggested it could be my ears causing mr to fall, I am also aware that inner ear problems can't be seen but all he said was that the ear drum looked healthy. I would guess the absence of  tinnitus could rule out an inner ear problem. I've worked on getting things reasonably comfortable for years but now I feel I'm taking a huge leap backwards. I am seeing the nurse on Monday I'll ask her if anyone specialises in or at least recognises fm. I used to see a fantastic rheumatoligest every 3 months or so but the last time I saw her we agreed I am managing my own pain etc quite well so I didn't need to see her any more but I could get re-referred if necessary. I used to manage her clinics so I know how difficult it is to get an appointment and I'm not even convinced this gp would refer me. I will speak to the nurse, I didn't realise how difficult it would be changing doctors, I knew everyone in the old practice but moved out of their catchment area.

      thanks for your reply.

      regards

      Shelagh

    • JulieBadger
      JulieBadger shelagh6

      Posted

      Hi Shelagh, I've just had 2 more blood tests done, both clear.  I do lose my balance sometimes, thankfully not falling over.  Although I did collapse once into the strong muscled arms of a 22 year old male once once - I pick my men wink.  I'm not sure if my balance problems are more the ME side rather than the FMS?  If you have memory problems too (FMS has the names remembering side) but the forgetting things alot and blank patches of memory it might be that you have developed ME too? I always say if you don't ask you don't get. So see if you can go see the Rheumatoligest again. Say that you stopped because you both agreed a that time you were handling the pain but things have changed and you feel that their guidance would be of benefit. Good Luckx
  • tiswas24537
    tiswas24537 shelagh6

    Posted

    not much you can do , in your situation , when ME started to strike people doctors didnt believe it was reall. its the same with FM.

    iv got a friend who paid a fortune at a private clinic to have tests to see what was wrong, the test came back as being infected with lymes disease , live and negative which means she had been infected some years ago and has been infected again a year ago while she was pregnant, on both occasions she presented at the doctors with symptoms.

    that were discounted as all in her head, and even now with a proper confirmation from a credited clinic her gp still wont have it, and her baby is at risk , because she was infected whilst carrying . SOME GPS  think there GODS theres not much you can do,esp if you cant change practise. dont let him get you stressed  it will make everything worse

    .

  • HazzaMcBazza23
    HazzaMcBazza23 shelagh6

    Posted

    "Don't believe in fibromyalgia"?!?!?!?! Some doctors need a good shake. Would they believe in it if they had the symptoms? Or if a loved one was suffering ? Is there another doctor in the practice you could switch to? Good luck.
    • shelagh6
      shelagh6 HazzaMcBazza23

      Posted

      I'm going to ask the nurse when I see her on Monday, I hope so, it's taken me years to get where I am with it.
  • shannon03304
    shannon03304 shelagh6

    Posted

    Hello,

    I am a new fundraiser for Fibromyalgia and have recently set up a Facebook and twitter account and currently in the process of setting up a website. Your story has interested me as my mum is a Fibromyalgia sufferer and she has experienced the same thing with her GP. It is extremely important that doctors become aware of Fibromyalgia and realise that it is most certainly, real! I am using patient stories on my awareness website and it would be brilliant if I could feature your story to raise awareness not only for the general public but for health professionals that refuse to accept the reality of FM.

    So with your concent I would love to use your story on my website to help raise the concern of the reality of what FM sufferers have to go through just to get a diagnosis let alone their day to day suffering.

    I hope to hear back from you,

    Shannon.

    • hope4cure
      hope4cure shannon03304

      Posted

      Good for you.

      yet her story is not that unusual. Many of my friends & family have experienced the same issues. I reall wasn't until the last 10-12 years that the medical community began to treat a disease call fibromialgia. 

      Befor that it was all in your head. Nothing oin UR tests sorry or it arthritis nothing I can do to help u.

      ahh but then a little magic in the pharmacudical market popped up.  Medications claiming to treat FM   Well then if there is medication to treat FM THEN THERE must befibromialgia.

      Next thing u know the new meds seemed to correspond with the generation of doctors. As the older docs retired.." The end..

      that's my story and I'm sticken to it..a lot of truth in it.....in my personal experience..even carpel tunnel was a new buzz word like FM....cry

       

    • shelagh6
      shelagh6 shannon03304

      Posted

      Hi Shannon, please feel free to use my story! For some reason I have suffered a relapse since seeing the gp on Tuesday, I have little upper body strength and from the bottom of my ribs up I feel 'strange'. Now I'm thinking it's in my head, not real, but I still can't get rid of the feeling. I've had fm for around 20 years, it was diagnosed by an old rheumatologist who retired a long time ago. I really didn't expect to get the reaction I did from the new gp, I thought it was widely acknowledged now. There is a support group not too far away I'm hoping to find the details and join them. Thank you for your support

      Shelagh

    • shannon03304
      shannon03304 shelagh6

      Posted

      Thank you very much! I will message you a final write up of what will be included on the site. Please don't think that it is all in your head, my mum had the same problems and now she finally has a doctor who understands and gives her the right medication to help a little with the symptoms. FM is not an imaginary illness, and this is why more awareness and money needs to be raised in order to promote research into finding the root cause. 

      I will let you know when the website has been published. Thank you,

      Shannon.

    • shannon03304
      shannon03304 hope4cure

      Posted

      I am glad you have reply and it is good to hear your story. I am trying to get even the most common of story's on the website so people can see the most common problems, I am looking to use a whole host of storys and if you are happy for me tp use yours aswell that would be brill.

      thanks, shannon.

    • hope4cure
      hope4cure shannon03304

      Posted

      Shannon,

      my story is very common... It all in UR head.. I even had one doc tell me to go read a book...called. "I'M OK YOUR OK".. In other words go make UR own diagnosis and prognosis. I did read the book. I was in my 40's beleived in drs & HAD a great deal of respect for them until then. 

      Really, I don't know where they get this stuff..maybe the doc was just having a bad day. I know I have my share when I'm suffering real pain not imagined.

      today I am crippled from a bad THR .. been recalled by the manufacturer

      STRYKER press fit ABG ll model. Over 30,000 of us have the mom implant all facing revision and in a lot of pain facing life long health issues from one 

      doc in our lives making a very bad judgement Call. I say that becuz since the 60's it's been well known that metal on metal hip prothesis cause life thr eating problems. So osteo patients have no choice but THR.

      WHAT r the alternatives ... None.. Trusting docs to do the right thing is what we all naturally do..not any more. Until u havr been the one that tis happens to not just sympathy hearing a out the thousands over the news recall effect, but now it's in UR body...hold consequences for the rest of UR life.

      this is a common story as well effects my FM .. See recall online for more info.

      STRYKER DEPUY & Zimmerman have all had recalls due to failures.

      i Guess u could say I gave u some homework..

      these issues do effect our FM .why becuz many orthepedic surgeons do not think past the osteo & how these metal implants cause more  serious triggers to huge flares.. My FM was totally ignored... Again..

      Have a Good Day!

      Hope4 Cure

    • tiswas24537
      tiswas24537 hope4cure

      Posted

      i dont trust gps and theres only one at my surgerey that i will with my FM

      he at least listens,

      i dread needing anything replacing or removing anytype of operation terrifies me because the pain never goes away, .i had a hysterectomy in 97 and still have pain above the scare ,

  • hope4cure
    hope4cure shelagh6

    Posted

    Oh boy I canpararell that experience to the letter. Unfortunately it's seems to be becoming more the norm . I suggest asking UR GP  for a referal... Friends.. Even UR dentist.

    i got the best referal from my dentist. It's always a work in progress with finding doc we are confident in.

    Good Luck biggrin

    • shelagh6
      shelagh6 hope4cure

      Posted

      Hi, I have a brilliant dentist but,,unfortunately they can only refer to the maxillo facial clinic. I worked in our local NHS trust until April this year, if I still worked there I could get seen no problem but I can't get it now. I will have a word with my old boss and see if she can do anything.
    • hope4cure
      hope4cure shelagh6

      Posted

      Hi,

      good idea ck with UR old boss... Even the secretaries office help.. Everyone has docs... Maybe there is one for u.. They can tell u if they like their docs all the details we never get from going cold with no background..GOOD LUCK.

      Have a good day!

      HOPEbiggrin

       

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