Will my doctor ever listen to me????!

Hi there, I am in the middle of a bad flare up of Fibro. I went to my doctor and described my symptoms, stating I was suffering severe fatigue and having trouble walking at all. I told the doctor that my medication of paracetamol, naproxen and Tramadol is not working for me. The doctor stated that stronger drugs would make fatigue worse. I got signed off work for a week. I keep asking my doctor for another referral to a specialist at a different hospital as I'm not satisfied that I just have Fibro. I have not had any X-rays, scans e.g. MRI and CT scans. In my opinion there have not been enough tests to rule out other conditions. I am even considering paying for a private consultation as I believed I have been fobbed off with Fibro! How do I get my doctor to see my point of view? Any suggestions gratefully received. Thanks.xxxxxx

29 Replies

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  • Hello Mikeymoo! Oh you poor thing - I sympathise, it can be so difficult getting the help and support you need. You are entitled to a second opinion and your GP knows this. Is your GP based in a local health centre where you might be able to see another GP for another opinion?! I would suggest you ask for a referral to a Rheumatologist, that would be a good next step to take. When I was referred, blood tests followed and also a full examination and consultation before my diagnosis. Try talking to your GP again and hopefully you will get the referral and you can take it from there. Best of luck to you. Please let us know how you get on. :) :)

  • Thanks LibbyDe, I have been seeing the same G.P. for 2 years as he is the one who originally got me a referral. I went through 5 partners at the same medical centre before I arrived at this guy. I asked him about a second opinion and he just dismissed it. I have asked twice now and as I am off sick from work I am left wondering what else to do. I am having blood tests but that is all for now.xxxx

  • I am amazed you are still working not many of us can do that . What do you do for a job ?

  • Hiya, I probably have the worst job possible for my/our condition. I work in the Police as a Community Support Officer. I regularly walk 5 or 6 miles every day which absolutely wipes me out and gets progressively worse as the week goes on. I wear body armour that applies pressure and weight around my shoulders, ribs, etc. I really enjoy my job, meeting people and helping resolve local issues. Every day I put up with derogatory comments from colleagues. The only reason I keep going to work is out of necessity. I have mortgage & bills to pay and live by myself. I do get paid a reasonable wage as a PCSO. I suppose I hoped the force would move me to a different role. I'm off sick at the moment so it may give them a kick up the backside & do something to help me;-)xxxxxx

  • maybe you could retire out on pension on ill health grounds. I must admit i find it hard to understand how you manage to do all of that walking and work and get home back to bed. I also have hyper mobile joints so i have pain in all my joints anyway then fibro came along and added to the fun what joy twice the pain but not twice the drugs. Thats a good point as you work for the police can we get canabis from the docs yet over hear at least then we will be very happy while in lots of pain. I hope you do get your doc to sort something out for you but i was told by mine there is no cure there is no pills or treatment you just have to get on with it best you can. I take about 180 pill a week for all the simptoms of fibro i still have a lot of pain 24/7.

    Good luck

  • Thank you Spike, I am waiting for my occupational health department to sort me out with an independent specialist but it is taking quite some time. The idea is to get a realtime prognosis and decide whether or not to retire me. I don't want this to happen but really I can't cope with my job without additional support, hence the reason why I am off sick. I am just expected to carry on as normal. My line managers just don't see the link between levels of activity and pain. I do hope to get something sorted. I hope that things improve for you pain wise. I know where to get a supply of cannabis, we have it in the office bagged up regularly!lol. I often wonder if it would work & reduce my pain. Only thing is, in my current position it's not even something I can consider. We should all live in California where we can get weed on prescription.lolxxxxxx

  • Well I hope you are one of the lucky ones and get all the help and support you need from work ( so you can keep your job ) and from the doctors.

    From Sarah

  • I have the same problem so I have changed doctors within the practice.

    I see her for a double appointment next week.

    And yes the rheumatologists did do a full examination and ask questions. She didnt do bloods but thats because I had them done before my appointment with her.

    Good luck and dont take no (for a 2nd opinion) for an answer

    hugs

  • Thanks for your reply. I have tried every partner and a locum at my local medical centre. If I don't get anywhere with the current guy I need to look further afield. My level of disability is getting worse, I struggle to walk at all. I get people staring as I walk like someone 40 years older. I am only 33, I have a mortgage and a car & live by myself. I am the only 'breadwinner' and if I lose my job I will not be able to sustain my life. I must keep putting pressure on my current doctor; if I change now, how do I know the new person will be any different? Hugs xxxxx

  • Hi Mikey , I thought that if you asked for your GP to refer you to specialists then they had to do that . Certainly I've insisted before when I thought I needed to see someone .

    I'm thinking about asking to see a Neurologist , having already seen a Rheumy , but I'm waiting as I have other health issues to deal with first and have 2 specialist appointments to attend in August .

    Have you asked your GP for a specific referral or have you waited to see if he suggests it ? If you haven't asked then I think that would probably be your next best step. If he refuses then ask for a second opinion.

    Hugs

    xx

  • Cheers Hun, my G.P. won't get me a second opinion as he reckons the hospital were correct in there diagnosis. I asked about other tests I could have had and he just replied "they (the hospital) obviously didn't think other tests were necessary in your case". I will try another 'assault tactic' when I have had my holiday next week. Hugs xxxx

  • That's a disgrace Mikey , you're entitled to a second opinion . Is there a more sympathetic doctor in the surgery ?

    Have you seen a Rheumy ? I by passed my GP when my condition worsened and contacted my Rheumy direct and asked him to see me again, which he did . I then insisted on a scan of my knees because they were agony .

    Have a brilliant holiday and then regroup and go back and insist !

    Hugs

    xx

  • Thank you, I think this may be the way to go if i contact the Rheumy department myself, though it is 9 months since I was last there and was totally dissatisfied. Now my job is at stake I think it is a good excuse. I'll wait until I have been on holiday then come up with a plan. I even thought I would write to the Prof. in charge. Hugs xxxxx

  • That's a really good idea , go to the top man if you can.

    I hadn't seen my Rheumy for almost 3 years when I contacted him. I just found an e-mail address for him , listed my concerns about my worsening condition and asked if he'd see me. His secretary made me an appointment .

    If I'm referred t anyone now, I always do an online search to see if I can find out info about them, and recommendations and if I don't think they're going to be any good ( from their reviews etc ) I'll ask to see someone else.

    I'm agoraphobic , so going to appointments is difficult , I don't want to go through the stress of getting there and then find out they are useless ! It's amazing what you can find out on the net these days .

    You are also supposed to get a choice of local hospitals now,so it's always worth googling them to see which one is rated best.

    Hugs

    xx

  • Hi Mikeymoo,

    Sorry to hear about your negative experience, however I think I speak for most of us when I say that we know what it is like being ignored or pushed from pillar to post. What Libbydee has suggested is defo your best bet, tell your go, don't ask, that you would like him to refer you to a Rheumatologist (I have learnt to politely throw my weight around to get what I need) once you are there things should start moving for you.

    I wish you the very best and hope you land in the lap of a caring, switched-on Rheumatologist :-)

    Until then try to stay strong, perhaps you have family, kids or a partner that can take over some of the more physical jobs around the house and you can start trying to pace yourself.

    Take care

    Mel xxx

  • Thanks for the advice, I will see how long it takes for my mobility to improve. I'm going abroad on holiday next week so maybe that will improve things. I'll see the G.P. again when I come back;-) I've already asked twice for another referral but maybe persistence is the key. I live by myself so I have to manage somehow. I don't have any friends nearby & my work colleagues abandoned me some time ago:-( I am holidaying alone just because I need to get away some place hot. Cheers, gentle hugs.xxxx

  • Hi Mikeymoo

    I feel really sorry for you that your doctor is not referring you as you deserve. I have been round nearly every speciality and still not got definite diagnosis. i have asked to be re referrred to a neurologist and am waiting for that now. Enjoy your holiday and let us know how you get on when you get back. Take care Sue xx

  • Thank you Sue, I'll keep hassling my doctor, I will see him again when I return from my holiday. What I really want is the correct scans/tests so I know for sure that I have Fibro and nothing else. I really am getting worse as time goes on & don't know what the future holds right now. This is causing me extra stress and I am sure it is exacerbating my illness. I will update when I have seen the doctor again, I'm having blood tests done on Thursday this week. Hugs xxxxxx

  • Is there something in particular that makes you think further tests would help? If you have symptoms that might suggest something else is going on that would show up in scans, it is reasonable to request them. On the other hand, if there is nothing pointing to anything else, doctors may well not think they are warranted.

    One tactic I suggest people use when a GP is refusing to refer for no good clinical reason is:

    Say calmly "I would like you to refer me for X because of Y"

    GP says no

    Ask why.

    If you are not happy with the answer, say calmly "Then please record in my notes that I have requested a referral to X because of Y and you have refused this"

    If there are clinical grounds for a referral, GP's hate to have it recorded that they have refused referral as it is their responsibility to refer if something is outside their area of expertise.

    However, the "If there are clinical grounds for a referral" bit is critical.

  • Thanks for this. My doctor refuses to refer me because I have already seen a Rheumatologist. I told my doctor that I wasn't happy with the lack of tests as fibro is something they diagnose when they have ruled out everything else. I went originally with extremely painful shoulders. I never had any x-rays or scans of the area. I will not be satisfied I have fibro until I have more tests. The symptoms of other conditions can be similar to fibro e.g. CFS. I will keep trying to convince my current doctor but I don't hold out too much hope.xxxxxx

  • Sorry to hear this MikeyMoo. I am appalled by the way fibro sufferers are being treated. When you are so fatigued and in so much pain you simply don't need it. Don't forget you do have the right to see a Rheumatologist of your choice. I am trying for Professor Davies or one of his colleagues as I am sick of my GP just staring at his computer and ignoring me. They simply are undereducated about fibro. In fact we know more than them about it as we suffer it. Stick to your guns. Go higher. Prof Davies is up to date and is open to all trials and different drugs and he's into alternative too. Just know what is out there for you!

  • Thank you Truthseeker, i'll just see how long this current bought of poor mobility lasts! I went for a blood test today (not as if that will show anything!). I've booked to see the same doctor again in two weeks, just before I'm due back at work. I saw Prof. Emery at Chapel Allerton Hospital over a year ago and he told me I would be treated as a priority as I was still at work full-time. I was enrolled on a fibro self-management course which taught me a lot about staying active. At my next follow-up appointment in October 2011, the registrar just confirmed I had fibro by going through the pressure points. I was then discharged! I'm thinking I may write/email Prof. Emery just to see if I get a reply. All I would ask is that I have a more thorough examination by way of x-rays and scans. I am now so much worse than I was then. I was told by the registrar that "there was no pathology." I would like to ask the consultant why I have pain & cracking in my joint? Why I have no power in my legs despite exercise to try & improve it? I want to carry on with my life as normal. I know that getting any benefits will be a long hard slog even though my disability is genuine. I will use my sick leave to get some answers. Hugs xxxx

  • Hi, Mikeymoo, Thankfully you have found this forum, as it seem's the only place you are getting support from. Maybe think about changing GP Surgeries. There does not seem to be an actual blood test that defines Fibro, Truthseeker is absolutely right you do need to see a RHeumatologist, they will ask load's of question, sleep cicles (all lack of it) they will press on different area's of your body, for someone who does not have Fibro they will not feel it, for all of us that do, it will hurt. It's then the number out of 18, the lower number's out of 18, the patient has mild to moderate, this patient can sometimes be able to work part-time, anyone higher, you are not able to do paid work. If you are seriously considering going private i would reccommend seeing a Rheumatalogist as soon as you are able to, they are the only one's who can confirm Fibro, also look at your Hospital's for any of them who have a Pain Clinic, normally done throu GP referral. Keep us posted Mikeymoo. Just to add you are not alone take care of planet you

  • Thanks for your comment. I have been to see a Rheumatologist, in March 2011 I got told I had Fibro. I had got so much worse since then. Having spoken to other people with fibro, they had many more tests e.g. X-rays & scans before finally being diagnosed. I am not convinced it is just fibromyalgia. I was having terrific pain in my shoulders when I first saw the Rheumatology. They never examined my shoulders through scans or x-rays. I don't just have 'typical' fibro pressure points, my entire body is painful when pressure is applied. Sometimes the pain comes from within my abdomen or thoracic area. If I can get my doctor to send me to another hospital/specialist for a second opinion I will be satisfied knowing I have a correct diagnosis. My job/career & future depend on it. Hugs.xxxxxx

  • Hi Mikeymoo your most welcomed, you are sounding you do have severe Fibro. Have you had surgery or any trauma in your abdomen area. You can however wake up so to speak with a pain, in one of my moment's i rang the surg as i was having crush pain's middle of chest,Doctor's thought i was having a Heart Attack, after having had tests in Ambulance and A&E Dept for any Heart damage, Consultant said it's Fibro, when had Appt with my GP Isaid when that happen's on a daily basis i wont you to end me. When i wake up on any one day, just dont know where pain's going to be. It's Evil, for people who dont have Fibro they just dont understand what it's like, how are you for noise ? Take care Mikeymoo, hugs to you to xxxxx

  • Thanks for this ihatefibro. You are so right, non-sufferers just don't have a clue what we go through every day. I haven't had any pain that I thought could be a heart attack but I have had very sharp pain in the chest area. I haven't had any trauma to my abdominal area but the pain is stronger than in other area's. One symptom I get that I keep forgetting is a crackling sensation in the back of my neck when I move it. I don't have trouble sleeping & sometimes I am in bed 12 hours (especially just lately). I do take 40mg Amitriptyline on a night and it takes a long time to fall asleep. When I eventually wake I am still so tired & feel like I've been hit by a bus!lol. I have a constant noise in my ears all day/night long, it comes from inside my body. It's a bit like having sea shells attached to both my ears. My whole body is 'buzzing' all of the time and I am so shakey! I can't do with busy, noisy environments, I avoid them at all costs. I am slowly becoming a recluse. I have been away from work 11 days and not one person has been in contact with me (many have me as a friend on Facebook so it's not hard!lol). How are you feeling today? Thanks for your help. Hugs xxxxxx

  • Hi Mikeymoo, you really are in a pickle. IF you feel your GP is wicked, and doing the utmost for you ok, It's just not coming across to me you are receiving the bestest care. VERY few people can be on Amitrip and working, especially doing the line of working your in, and possible male Dominated so lack of understanding. It's times like these you really know your true friends. It's taken my Mum and sister nearly 3 years to totally get it. Without being to personal if you normally dont have any Gynae problem's maybe have your abdominal pain checked out with a GP Year's down the line i still do not know what's Fibro or something else going on, when i said this to me Gp she said neither do i. So if it's more than a week of this something else, i check with her, to save an appt she will call me after Surgery ends. Y

  • Sorry Mikeymoo, my fingers faster than my brain. i dont understand why your GP is not going down the Incapacity Benefit which i think is called something else. Try Social worker's, they will understand your difficulty's if they can not help - should be able to send you in the right direction. Dont know if Job Centres can help, or CAB - CAB helped me with DLA, Thats another line to go down with, a long process, persistence is needed. O.T. If you are experiencing problems in your home, as it is your home with Mortgage, maybe ask this forum for the Ladies that have their own home, hopefully they will be able to help. Your neck not sure, whether is nerves trapped, tension or both,or IHATEFIBRO Hydro may help, warm water- typically the more stressed you are the more it hurts. If you have'nt already maybe contact The Fibromyalgia Association .co.uk give them a buzz, they are people that have what we have, just talking and you asking question's may help. take care hugs xxxxxxx

  • Hiya, thanks for this, I don't really want to go down the Incapacity route yet as I am only 33 and my employers need to consider moving me to another post, or just giving adequate reasonable adjustments would be a start. I did try for lower rate mobility on DLA but got turned down flat. My home I can manage without O.T. at the moment. I live in a ground floor apartment anyway. You are right that warm water helps, I now have regular baths at home, I get in the water as hot as I can stand it. I am managing (just) to haul myself out of the bath using my arms. I am hoping to see my local CAB at some point soon but they only open short hours on Monday's and Wednesday's. I was a member of my local fibro group but I didn't find it helpful and it seemed very exclusive and 'clicky'. I feel totally trapped as I can't afford to sell my flat but I wouldn't be able to afford the mortgage if I had to stop work for a while. I will be staying on sick (if my g.p. approves) until I can be re-assured that work give me the help I need. Thank you for the advice, I am going on a holiday to Gran Canaria (away from the rain!lol) tomorrow. I just hope the sun helps my pain. It might be the last holiday abroad i have if Mr Fibro has anything to do with it! Hugs xxxxxx

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