Hi I'm new here, been diagnosed with chronic fatigue syndrome fibromyalgia and copd for 6yrs, I'm no longer under a consultant or pain clinic, went to my gp today as my pain has got worse can't barely walk with the pain in my heels and my knees feel like they could dislocate at any minute, was told it's all in my head and I might as well not be on any meds basically feel like no one wants to help and I need to sit in a corner and just get on with the pain! Don't no where to go from here any advice welcome thanks in advance for reading

13 Replies

  • So sorry to read your post I too was told "its all in my head"-

    Now after seeing at least 7 different GPs I have found one -that listens. - I read in an article that I should see a younger doctor who will more likely know more about fibromyalgia so I went on a mission of keep changing doctors -please dont despair we all believe you - Neese

  • Keep going to see your Gp or if it is a practice go to one of the others. I find that you need to have faith in you gp, one who listens to you. Can you go back to the pain clinic for more help.

    Hugs Liz

  • Hi Bobev

    Welcome to the forum and it is wonderful to make your acquaintance. That is absolutely awful and you have a contract with your GP who has a duty of care to you. I have pasted you a link below to have a Fibro information pack sent to your GP if you choose too, from FMA UK our mother site:

    I want to genuinely wish you all the best of luck.

    All my hopes and dreams for you


  • That is shocking the way you have been treated, change doctors.

  • I too am no longer under the care of any consultants for my Fibro, the last 1 came in as replacement for an excellent consultant when I was having Lidocaine Infusions which were practically unheard of at the time. As soon as this new consultant took over the attitude of the pain programs changed and after asking continually for him to examine my shoulder to be told oh it's only Fibro, my dr sent me for scan and I had to see orthopaedic surgeon got shoulder surgery. The last time I saw pain guy he said there is no such thing as Fibro it's depression, I said I knew you had no sympathy or empathy for Fibro patients as I could tell by the way you spoke time & others. At the time I hadn't been depressed but was on anti depressants to help with my eating disorder, he said oh the dosage you are on there you may as well be taking smarties, I found this disgusting & thought had I actually been going through a depressing time, which I have many times, I could have thought oh I'll up my medication which could have been dangerous. It does concern me that when it comes to my DLA being offered the chance to apply for PIP. The fact I don't see a consultant may be seen that I am not as I'll & suffering as much as if I were seeing a consultant. I have had to see many gp's at my surgery to find 1 who I feel takes my concerns & health problems seriously. As others had said you need to find a gp who has good knowledge of Fibro & all the problems it can lead to. I hope you are able to find a go who can help & give you the treatment you deserve & need

  • Oh I can feel your frustration, which does not help with the pain and syptoms that you are experiencing....I do so hope that you find the strength to go to another doctor...there are some great links here that Ken and others put up..and the sister site is great too....I find it fascinating that some say its in your head...I reply that it may be..but it is a physical symptom, and I was certainly not depressed before t!....I tend to think that any depressive type thoughts are to be expected with ths thing!....however for me I know and experience the pains, and discomforts, and because I know I am not making it up I feel strong in myself with the support of friends here that we are listened to by many...and so hopefully the unthinking comments you had to endure from the ignorant will be something you can soft hug...x

  • On a personal note Bobev ....My doc has worked with me..but it helped that she knew me before this thing...I am off all meds and trying other ways to manage this....and tomorrow have an appointment with the Wellbeing clinic...apparently one hour!...wowser!...apparently the practician is well versed in fibro stuff and prides himself in helping!...wonderful, cant wait to meet him and hope that there may be some suggestions from him that will aid n the mamagement of my fibro...I am so passionate about managing better, and hope that one day I will be able to offer some help to others...I am sad though that I cannot commit to work , even voluntary as I never know how much I am able to do from day to day....but I do hope that Well being clinic will offer some thngs to try that I have not thought of...and I know that my fparticular journey with my fibro is more manageable now that am not having to cope with side effects of meds....but 'in my head.'.??.

    how ridiculous...why would I inflict this on myself!!

    I think my doc can understand that no way would a healthy person who enjoyed all the perks of healthy and working life suddenly decide to make up in her head that she prefers to be in pain, with all that brings to herself and family and to be penniless to boot!! brainer...c;mon ..lets be pro active in answering ignorant comments...well at least in the moments when we have strength and energy.....go well all ...I shall tell you about my appnt if you want ...xx

  • Hiya 

    I fully agree with you I was the same my Dr new me.

    When I did see someone about it and went on the sick I had to have an interview with the job centre.

    I asked them to answer just one question as this lady 3/4 of my age.

    Why on earth would I give a £27 an hour job up one that I can go when I want go home when I wanted for your measley £75 a week.

    To my suprise she just sat there and said well I know what you mean but I am just doing my job.

    I got up and left in discusted refuesed to go back.

  • friend Freelander72 posted about this very topic several days ago..hope you can find that post and replies...they are very helpful in many ways...good luck x

  • I recommend you ask for a referral to a podiatrist as you presenting with heel problems. Any problems with feet or ankles can cause you to walk differently that can have a knock on effect with your knees. You really should change doctors until you find one that has knowledge of Fibro and its many presentations. Best of luck.

  • I also have problems walking due to the pain in my heels. It is in a really funny place as it's sort of just above they heel. Anyway I digress from what I was going to say. I was lucky to have been seen by a newly trained doctor, who immediately did the pain checks, before saying that she thought I might have Fibro, she also did lots of blood tests to ensure it wasnt something else. But she moved on and I was left seeing a GP who really didn't belief the previous diagnoses. I was hurt and angry that he didn't believe me or the other doctor, so at future appointments I refused to see him, although he was the "Top Dog" at the surgery. I found two doctors at my surgery that really understand and I only see these now. So I suppose what I'm saying is avoid the doctor that hasn't kept up with newer illnesses, try others at your surgery and if that fails, phone other surgeries in your area and ask if any of their doctors know about Fibro.

    Sorry I was long winded this morning, and I really hope you find that special doctor that understands.

  • Oh no, I really feel for you, I can totally empathise with your pain because I have the same thing with severe pain in heels (not as bad as last year) and can stand on my feet a lot of the time, much much worse first thing in the morning and after sitting. I have Fibromyalgia too and also very bad pain in both knees for many years and also mine feel like they are going to dislocate, and they feel like the knee cap it catching on something when I bend them 😢.

    Have you had an ultrasound scan on your feet? I have and I have Plantar Faciitis which is causing the pain. Both the ligaments are extremely thickened and Hi have enthesopathy so there is inflammation at the site where the ligament attaches to the heel bone so extra severe pain. I'm thinking you may have this condition too. If you haven't done so, ask GP or Rheumatologist for a referral to ultrasound for a scan for suspected Plantar Faciitis. If you have it, you can have Cortisone injections which are absolutely brilliant. I'm in pain now bcoz I've only had 2 lots of injections over a long period of time. I'm a weird case bcoz mine keeps getting better after the injections but then gets worse again after 4 months or so, normally it gets better and doesn't return. It might be with me, I'm unlucky and I have the bone spurs and also Hyper mobility syndrome, other people general recover from plantar fasciitis.

    Tell the GP that you want your knees scanned too because if you have plantar fasciitis, you may also have the ligament thickening in the cruciate ligament in your knees and they can give you cortisone injections in the knees too, you might be a person that has tendency to suffer ligament problems. If its that, you will be pain free straight after the injections, its bliss afterwards, I highly recommend looking into that because it gave me a huge amount of relief when I was completely and utterly immobile 👍

  • Hiya and welcome.

    So sorry you have been treated like that, I got an fibro pack and took it to my doctors because there was only one of them new anything about it,even got a poster and he put it up and asked all the doctors there to read them pack.

    Ok he's same age as me but he teaches at the hospital as well and said he knew all about it. The day I do him I was so bad he told me to give up work I just said I will have a couple of weeks thanks, I managed another 4 years thanks to my boss flexi hours.

    So get some information sent or hand it in and ask the doctor to read up on it then he will hopefully understand more when you o back.

    Handing it in is better no excuse for not getting

    I ask to see a specialist.

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