How to find the right GP

I've not really posted before but have a question regarding finding a Dr who understands Fibro.

I have suffered symptoms for around 15 years. I have a family history of RA so I assumed it was mostly down to that. When it got to a point, around 9 years ago that I could no longer cope with the pain and it had begun to affect my day to day life, I went and spoke to my previous GP. He diagnoses RA (no tests just a physical exam) and prescribed me 75mg twice a day of Retard. It worked..ish...brilliant. He also referred me to the practice physio who confirmed the RA and gave me exercises and a stick to help me walk. However it became increasingly difficult to get the GP's to prescribe the Retard. At one appointment I was told that it was simply too expensive to give out on prescription so I was instead given dyhdracodeine and dyclophenac. These made me violently sick but I persevered for a month before going back having had no real pain relief in that time. I was very reluctantly give another prescription but told not to expect another. After that I didn't really bother going back and managed on over the counter pain killers. I moved home 2 years ago. So a new Dr's surgery. I went to see one of the Dr's who wanted to do blood tests to confirm the RA which I happily agreed to. When the results came back, he told me I didn't have RA at all and the the 2 tests were negative. A bit of a shock! So I asked him what I did have and his answer was to shrug his shoulders and suggest I become a bit more active and try to lose a little weight. I went home and just cried. I was absolutely beside myself. My husband suggested I saw the same GP at the practice that he was seeing. So finally, 6 months ago I did. I explained everything and he sent me for some x-rays. A week later he said that the xrays were normal. Again I was gutted. This time though he asked questions and did the pressure point test. OMG! I have never felt such pain. My knees, back, neck, shoulders, hips and arms still felt bruised and tender 3 days later! He explained he believed I had Fibro. He gave me Tramadol and Amytriptaline and a fact sheet and explained a bit about it as I'd never even heard of it! Anyway, when I made an appointment to see him 2 weeks ago, I was told he had left and was given an appointment to see another GP. She asked me why I was there and I explained it was for a medication review as I hadn't got on with the amytriptaline. She checked my notes and asked me to fill out a depression questionaire?? Afterwards, she prescribed me a low dose of Prozac to "Lift my mood..." (whatever that means). I do not feel depressed. I don't feel I have an issue with my "mood" other than suffering bouts of total fatigue where even getting out of bed wears me out! She also suggested that I begin to take regular exercise and socialise more which would all help with getting rid of the Fibro!!! I was, and still am stunned! If I could walk without 1 or 2 sticks of course I'd take up regular exercise.....I used to go to the Gym 3 times a week and I used to walk everywhere!!! I haven't taken the Prozac. She seemed to think it was all in my head ......................... gutted after finding a fab GP who believed my pain was real to suddenly, again being made to feel a fake!!! I just want a GP who believes me.

Hi litlun,

Ive just joined. I feel so like you. Ive been chronic now since Christmas. Being passed from one Dr to another. All tests are negative - bloods MRI etc. Last ones EMG at end of month.Seems like since it is not MS im sort of left out to dry( like im unimportant - not an interesting case). Now the most stupid neurologist has referred me to dermatologist lol! In UK derma is just that skin complaints. She didnt even look at my sunburnt swollen legs or listen to my symptoms. Now they want me to see mental health team cos i mentioned the S word = suicidal... that was a figure of speech to explain the pain was killing me.I am not depressed in the sense of depression, i am anxious and angry and frustrated at the ineptness of UK health care.I am so bad now i am getting internal tremors as well as twitches. My life has just been stolen overnight! Occupational therapist(lovely lady) has given me sticks and some aids to help(shower step, stool, bath board, wedge for bed, frame to keep bedclothes off me ).. Im really disabled... how can this be?

I also present the erythromelalgia symptoms - red extremities, swollen, pain,bulging veins, intolerant to heat etc....Im getting flares up random during day every day and especially at night. Desperately trying to get to see EM specialist (only 3 in entire Uk ).

To be struck down(sorry thats how i feel), with double whammy is just unfathomable to me... Why? Emotional trauma/stress of which ive had dreadful amount last few years. I just need to be diagnosed. Im frightened. Im in agony. Im wiildly trawling the blogs grasping any ray of hope re:: aspirin or apple cider vinegar etc... I can.

Please tell me that my symptoms are 'normal' for FM and EM. Im getting such dreadful internal tremors - especially when at rest, my face feels strange, lose sensation /feeling in my hands, feet etc, all my limbs and joints feel swollen ( my knee is), my legs have been double sized for 4 months - they get even bigger at night, im exhausted but dont sleep. This is such a dreadful illness.

Any advice on how to manage symptoms and meds to take welcomed. Sorry to moan. Again, thats not me.. i feel i dont even trecognise myself anymore. How did you get diagnosed- what field of medicine? Im Uk. The more i argue with Drs the more 'hysterical' they label me... Im far from a push over but im feeling so ill and weak im losing the will to argue and battle with them

Hard to type or think so apologies for grammer and flow of message.

Thank you all

God bless

mads

http://www.healthcentral.com/rheumatoid-arthritis/h/does-rheumatoid-arthritis-show-up-in-blood-work.html

http://labtestsonline.org/understanding/features/reliability/start/3

Dear litlun,

So sorry you are going through all of this upset trying to get a diagnosis. We all certainly understand this emotional ordeal! I have to ask if you have been examined by a Rheumatologist, though I am not a Dr, from all I have read on the different types of arthritis, they just do not always show up in the blood tests, symptoms, examination and family history play a big part, but the x-rays also tell so much.

It sounds like you are in the UK, can you ask, insist on a Rheum to examine you?

Not that fibro is not excruciating enough, because it surely is. I have Psoriatic Arthritis, my GP thought it was RA, but he was wise enough to send me to a second Rheumatologist who finally diagnosed me. Mine kicked up with a car accident, the x-rays at that point just showed a buldging disc, but in 8 years, the degeneration shown on the just recent MRI, shows intense progression.

It is good you were x-rayed, it was the right thing to do, and they will use that for comparison for further x-rays to see if there are any changes.

In the meantime, we are all here for you, and understand how you are feeling. If you click on groups at the top of the page, you can join the fibro and arthritis group if you wish, I always try to keep up with all of the new things going on with all types of arthritis.

Right now they are just trying to see what meds work for you, I'm not sure why a Dr would give you a drug that you would not be able to get on a regular basis, unless you were in the med trials, but I am not a British subject, so unfamiliar with your system.

I have FM, but not EM, but I'll send you a gal who does have EM.

After invasive treatments and tests, I got to the point where I could not stand bed covers on me either, had to even sleep with my feet on a roll pillow to keep my legs from touching the sheets where I laid. Fortunately it has passed for the most part.

Years of pain and frustration with no answers, or conflicting answers, and no real solutions, can make you an emotional mess, even the strongest of us! I understand your situation completely, totally.

I'm going to try to find info for you that was just posted here on site about EM. Take care, so glad you are here with us!

Sending you a big hug,

SK

Sorry, it was not EM that she had. There are so many people here, I can usually keep track, but not this time.

I can offer this info, which you both have probably already read. Will keep my eyes open for you both!

http://en.wikipedia.org/wiki/Erythromelalgia

http://ghr.nlm.nih.gov/condition/erythromelalgia

https://www.rarediseases.org/rare-disease-information/rare-diseases/byID/245/viewAbstract

I FOUND HER, SHE IS THE MODERATOR FOR OUR GROUP ERYTHMELAGIA.

http://www.livingwithfibro.org/profile/lauraflora1

HERE IS OUR GROUP FOR EM

http://www.livingwitherythromelalgia.org/

Laura is the nicest gal, and very well informed on EM. Hope this helps you both!

Hugs,

SK

I see that Laura has not been here for a few weeks, so I joined the EM group to leave her a message! You should be hearing from her!

Hi lauraflora,

I am on EM page. I spoke to you before. Im trying to get app with Dr bennett too after speaking with you - remember in chat about 6 weeks ago. So has Dr bennett gone? Im in Norfolk Uk. I think there is one Scotland and midlands - Dr Choy? cant remember. My GP and i have worked out i have EM and fibro. Now im in system I have to go along with them passing me around. Rhuem, neuro, pain clinic all useless. Now im seeing vascular and derma. Can u believe it neuro said to see a dermatologist as i have red extremities and over body now including face... errrrr exacuse me EM is staruing you in face. Anyway i am with both of sites now. You are all a great comfort. Im getting my head round this all. I need a FM and EM specialist UK- even if i have to go privately.

How r you. U havent been on site or i havent seen you. Hows the pain? I remeber you have a daughter and like cycling.. see u made an impression - lol! Whats happenming with u and Dr bennett? You were so hopeful before about the app.Let me know how u are ok. Thanks for coming over lol! So kind of SK to go get you for me. I am in rather a state over having double whammy- anyway

You are in my thoughts and prayers

Big hug to you

mads x

Hi SK,

thank you so much for getting laura. I had spoken with her before as i joined EM site first before GP thought I had FM too. It was so kind of you - it really was. I didnt have the links you gave me - again thank you for that. Feeling slightly stronger emtionally after such a warm welcome yesterday. Everyone has really given me such comfort - its amazing. I feel like i can cope today. Thank you all from bottom of my heart. I received some occupatiional therapy equipment today which should make things little easier. My poor mother has been trying to manage and care for me lasat 3 months.

I hope you are having a 'better' day today. I look forward getting to know you. You are in my thoughts and prayers. Again , thank you for such support and help

God bless

mads x

Hi everyone. Thank you for all your replies. I do have a diagnosis of FM, the problem no is the GP that diagnosed it left the practice. The GP I am now seeing gives the impression that she believes that it's all in my head and related to depression. I just wanted to know if there was anyway to find a GP who is good with Fibro. Many thanks again for all your replies.

Hi litlun & mads, as I read both stories I am just in such disbelief that in this century of such modern medicine that the medical community can’t see that we need fibro specialist !! I’m so tired of everyone being pushed off as being depressed… Sure we get depressed, but mostly over the frustration & untreated symptoms…i feel your frustration… & I wish there was a way to put a book together of stories like yours and sent it to someone ( in the US, it would be AMA ) that would see the problem. Sometimes it feels like we live in 1913, instead of 2013.
I’m not familiar with the UK system, but thank God for Bens Friends…
I have lost alot of faith in the medical community, which is why we have to educate ourselves and be our own advocates…
You ladies are such an inspiration to us all… To keep moving foreword not to give up & keep looking, I feel very blessed that my dr. Continually educates herself on fibro & it’s symptoms, having a good relationship with a primary that believes me & wants to help you, makes all the difference in the world !
It drives me crazy when one dr’ says one thing and another says another thing… It’s scary ! Who do we believe …??
SK… Awesome that you found Laura from ME… You amaze me !!!

Hugs & blessings
dee