Why don't doctors believe me?

Hi I'm new to this app. My friends suggest I sign up and it's only my family and friends who have understood the battle I've had since I was a teenager. I've been in and out of the doctors and hospitals for 16yrs. They have thrown antidepressants at me and basically told me my problems are psychological. I've many blood tests, chest X-rays , brain scans, vision tests and ecgs for my heart yet everything comes back normal, I've been trying to get a diagnosis and some answers yet I've been isolated by the medical profession and made to feel like a hypochondriac. I'm constantly in pain and take painkillers daily. I wake at night in pain. I suffer extreme fatigue, then insomnia,headaches and irritability and get breathless and have awful muscle weakness. I just feel most of my life I've felt ill. I get weeks where I can be ok but then I crash and feel life's a huge struggle. I'm 31 now and I'm a self employed car cleaner so my job is very physical and I've had to really struggle. What gets to me more than anything is not being believed by my doctors. I've seen many and now I feel like they hate it when they see me walk in. Any advice would be great off anyone because I feel I've hit a brick wall 😩

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63 Replies

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  • Hi my name is plugger1, when I was diagnosed the first thing my Dr. said to me that it is real and not in your head, he was the greatest Dr. he is located in Colorado where do you live if you do not mind my asking, do you take medicine for sleeping and what do you take for pain. I will gladly talk with you if you like, maybe I can help. Plugger 1

  • I'm in South Wales in the United Kingdom. I use to take codeine and now I've gone down to paracetamol because the codeine was causing me problems. So I'm basically not on anything other than over the counter paracetamol and my doctor keeps giving me antidepressants which do nothing for me because I'm not depressed because of any mental illness, I'm ill and sad from not being believed or having any help with constantly being in pain or ill. I'm Amy by the way I've totally misspelt my user name but can't change it 😂

  • I know what you mean. Drs common question; so, why are you here today!!

  • I had the same issue with my docs.. took me over 10 years to finally refer me.

    Keep pushing them! And don't be afraid to make suggestions. Fibromyalgia only gets diagnosed once everything else has been dismissed. Take people with you to appointments. Ask for referral to a pain management clinic.

    Hope this helps.

  • Thanks yes I have said next time I go in to the doctors I'm going to demand to see a specialist even if I have to pay. I can't keep being dismissed like this it's horrible

  • You shouldn't have to pay Amy. You just need to demand to see a specialist. You have rights and you are entitled. I know it shouldn't make any difference but I tend to get more out of my doctor first thing in the morning, when they are not tired and not frustrated with other patients. They are more fresh and more tuned in to their patients.

    It shouldn't matter I know, but in the morning she takes more time to speak to me and seems more interested, later in the day, she is runny late and somethings snappy.

    Keep us informed with your progress.

  • Hi there and welcome to our friendly site , what part of South Wales are you, I'm not far from Cardiff, i would definitely ask to be referred to a rheumatologist who can get to the bottom of what's causing your pain, as said don't give in , good luck

  • I live in st clears not far from carmarthen. Thank you m,yes I certainly will keep on it's awful how these doctors make people feel like they're going mad! They did the same to mum many years ago when she was in her 20s until she paid to see a specialist and finally got diagnosed with endometriosis and had her womb removed. But she had a battle to be diagnosed and treated. Doctors need more training they can really send people around the bend

  • Oh right, I've sent you a PM

  • Hi Piscesbeauty86

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

    fmauk.org/

    I am so genuinely sorry to read that you have had doctors that live in the medieval times. FMA UK can send a information pack to any doctor / medical professional in the UK free of charge and anonymously to educate them on Fibro. I have pasted you a link to this below:

    fmauk.org/information-packs...

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Thank you ever so much ken I shall certainly have a read of that later. I certainly think my doctors surgery could do with those information booklets they really do seem to be in the medieval times! I've had 3 doctors tell me it's psychological all because my blood tests and X-rays were coming back fine. Well other than by folic acid levels are always low. It's been extremely frustrating. My mum said I use to have problems as a child standing up for long periods of time and she wished she had investigated more back then but as I said to her she'd never have had sense back then as I'm struggling now for the doctors to see my problems. But thank you I much appreciate your help

    Amy

  • Good luck my friend

  • Hi hun I know it's a struggle. I went through this (maybe not as bad) when I was trying to be first diagnosed. Have you been referred to a rheumatologist yet? They will be the best able to diagnose fibro. Also can you change surgeries? Your GP sounds awful and condescending with obviously little knowledge on fibro. Maybe print out some info on fibro and also the 'tender points test' so theu can at least be somewhat informed on it. I'm really sorry that your having such difficulty and being told that it's "all in your head". Just remember that it isn't. Your problems are real and we're all here to support you. Big gentle hugs xx

  • Thank you yes it's been awful last thing anybody wants is to be in and out of the doctors or hospitals. To be made to feel like it's all in my head has been hard but I won't give up, I almost decided to put a complaint in regarding my surgery because 3 doctors have told me its psychological and I'm not having it, I'm self employed so if I don't work I don't get paid it's been a real struggle, these doctors must think I enjoy being ill or something. Bloody nightmare. But enough is enough I'm going to demand to see a rheumatologist now hopefully then I will get some sense xxx

  • Some doctors do take a special interest in fibro because it's such a complex condition. My gp is currently of no use either. They just gave me naproxen and other anti inflammatories which don't tend to be of much use for fibro. Did see a nurse the other day who gave me cocodamol as she was more understanding so you do get a lot of doctors and nurses who are more understanding than others. I must look like either a drug seeker or a hypochondriac or something lol xx

  • Yes they do make you feel like a hypochondriac it's awful. Sounds bit bad but I'm so glad others are in my situation it's nice to be able to finally speak with people who know what I'm going through. It's a horrible condition one which makes suffers like ourselves feel isolated from society. I'm so glad my friend told me about this app

  • It's an isolating condition. For me it's not so much the pain that's isolating but the anxiety that comes along with it. This forum has been nothing but supportive so it's good to stick around as in my opinion only fibros can understand other fibros xx

  • Yes I dealt with awful anxiety o started going to group counselling to deal with it they've been amazing there. I now volunteer at carmarthen mind for them as I appreciate everything they did when I was at my lowest. It's nice to give back and I've met some lovely people xxx

  • It's great to have people to talk to about it. Also Sertraline helped me so much. Fluoxetine made me a suicidal wreck. Constant panic attacks? No thank you xx

  • Yes fluoxetine did exactly same with me so I went back to sertraline. I think sertraline targets the serotonin in the brain which is low in our case, but they aren't miracle pills to be fair but I'm comping much better on them than without. I think I suffer most in winter I seek to spiral in to the most depression and I get more attacks and pain. Xxx

  • My downspirals usually happen in winter and summer. I don't really get any painkillling benefit out if Sertraline but I am on quite a low dose of 75mg. I'm much better of on them because I loathe CBT with a passion. They make you feel like it's something you can just snap out of which is really unfair. Also feel free to PM me at any time if you have things you want to talk about or just to rant about crappy doctors lol I do that quite a lot myself xxx

  • Thank you 😊 yes I certainly will I'm just getting ready for work now. I'm having my tonsils out next Friday too I'm dreading how ill I'm going to feel after that I'm probably going to be bed bound for two weeks annoying everyone on here 😂xxx

  • Haha I would be exactly the same. I have about 70 million questions questions that I try and spread out so people don't think I'm mental. Good luck with operation I'm sure it'll go well. Just expect the fibro to make it absolutely exhausting xxx

  • I agree about Naproxen. I was given naproxen and Amitriptyline for cervical spondylosis a few years ago and both are ok for that condition but Amitriptyline needs to be take every day as the build up in the system is what works. However I don't like taking drugs all the time so I take it just when I need to but then it knocks me out for six and I feel drugged and whoosy the following day.

    So I read that naproxen and Amitriptyline is given for FM so tried it but neither are any good really. I don't know what painkillers are any good really.

  • It's frustrating to have a chronic pain condition as it is without painkillers doing much difference. Naproxen did absolutely nothing for me. Never been on Ami as I'm not even being treated for fibro atm which is why I'm changing gps. Hopefully something will work! xx

  • I too had the condescending GP. As he and another GP had misdiagnosed 2 other medical conditions in the previous year,mi had no faith in them.

    Eventually he referred to me a respiratory clinic at the local hospital (7 month wait) who found nothing of course. That dr referred me on to a Rheumatologist ( 8 month wait) with a query for connective tissue disease. I gave up on the 8 month wait and paid £220 to see a rheumatologist privately, where I got a diagnosis of fibromyalgia.

    Not been back to the GP and learning ( slowly!) to manage it myself. Looking back, I can see I had possible signs of fibro as a teenager and realise now I've had it full blown for several years.

    It's not in your head, and you will get a proper diagnosis in time, I'm sure.

    Lots of info, support and advice on this site which I'm sure you'll find helpful.

  • Yes I've got to the stage where I have to manage everything by myself these days the doctors are useless! I'm so lucky to have such supportive friends and family. My friends told me about this app and I've slowly been having a read through the fibro communities. It's certainly way more helpful than what the doctors have ever been. I do need a diagnosis tho so it can go on my medical records so I think I will end up paying to go privately it's only then I think I will finally get some sense!

  • Xxx

  • hi there

    I have had constant battles with GP's for years who refused to accept anything I told them -not my Fibromyalgia but abdominal problems .Last year the Gp who was treating me for my abdomen and confirmed diagnoses suddenly decided on a whim they were "all in my head" so I fully get where you are coming from and I was accused or being Hypochoncdriacal and having Body Dysmorphia.Now no Gp will believe me even with new and recurring choking,It took three years before my own GP admitted that my choking /swallowing problems were genuine and not "globus" and despite having repeated choking fits still not taken seriously.

    Like you I have had scans and xrays which come back as normal -so symptoms get dismissed.For years I have been telling them I cannot eat -have no appetite -yet have gained several kilos on my abdomen ,I spend every day crying because of the condescending attitude of gp's and their absolute neglect and all the organisations that are meant to help with problems with the NHS -dont want to know.

    You are so lucky to have the support of family and friends ,I have none of that -only that of the wonderful people on HU .

  • Aww bless you and yes I know how that feels too I had serious problems with swallowing food about 15 years ago I became anorexic because I hated the thought of eating and swallowing. It took me years to get over it and even now my neck goes in to cramp and spasms it's very scary. They've put it down to my tonsils which I'm having out next week. I have had a lot of problems with my tonsils but I don't think it has anything to do with my spasms. I also wake at night in pain from my oesophagus. Yet they've dismissed that I though maybe I had a yeast infection but the doctors said it can't be that. I tell you it's like banging your head against a brick wall at times

  • Hi Rainbow,

    First, I am so sorry you have been made to feel the crazy person. It is absolutely unprofessional of any practitioner to make an assumption because they are not a good diagnostician and are not knowledgeable enough to diagnose your condition, well then "it must all be in your head" ...couldn't possibly come up with an "I don't know, let me see if I can refer you to someone more knowledgeable to help figure out what is going on."

    I had a Doctor [I don't feel he deserves the title, I don't care how much he paid for that degree] suggest that it was all in my head, he declared me a "Malingerer*" I warned him not to make that word a part of my permanent record or I would sue him. He handed me a prescription "to help with the pain" I looked at it, it was an antidepressant. I cried, I can still feel the sting of hot angry tears on my cheeks.

    When I got out to the check out desk, next to the waiting area the girl at the desk asked me when I would like to make my next appointment. In my loudest SERIOUS voice I said "My NEXT appointment? How about NEVER! I wouldn't come back here for medical expertise if he was the last "Doctor" on Earth. The Hippocratic Oath begins with "First, do no harm**." He'd be doing himself and everyone waiting to see him a great service by taking the oath again and actually MEANING it this time." And I left. I think I sat outside in my car for another 10 minutes, hovering between anger and devastation.

    I know this is not in my head. I know I am not crazy. It would take way too much time and energy to pretend ALL of this. It took me 25 years to get a diagnosis and when I finally sat in Dr. Brown's office [he is a Rheumatologist who treats autoimmune diseases] and he told me I have primary fibromyalgia, which is fibromyalgia with rheumatoid arthritis. I cried...wept, actually. He had given me a few minutes to dress. He came back and I still hadn't changed and I was sobbing. He asked me if I was alright and I told him Yes, I'd be dressed in a minute. When he came back I had managed to dress but couldn't control my emotions. He was very close to calling someone from the Psych Ward to come down and see me. I didn't want that so I managed to stop long enough to tell him why I was crying which was the fact that after all this time I finally FINALLY had a diagnosis...and I left. Sometimes it takes finding the right Doctor to listen to you AND believe in you. [sorry this is so long] :) ~Sharon with all the gentle hugs I can muster on what is not a good day for me

    * Malingerer definition, to pretend illness, especially in order to shirk one's duty, avoid work, etc.

    ** Epidemics, Book I, of the Hippocratic school: "Practice two things in your dealings with disease: either help or do not harm the patient".[

  • Piscesbeauty86

    Hello and welcome to our lovely forum.

    We are here to support you on your journey my friend. I see TheAuthor has sent you some very useful information. Please do take a look you will find it very informative.

    Members and admin alike are very friendly and supportive.

    Good luck on your journey my friend.

    Sending hugs

  • Hi there and welcome, I notice you mention in one of your replies that folic acid levels are always low. Have you ever had blood tests for B12, ferritin and folate and VitD? Folate is often out of balance in those of us with low B12, and sadly doctors often are unaware of the real importance of B12. It isn't just a vitamin, but a vital building block for all our cells, and especially our nervous system. If it is low, then severe pain and exhaustion can be the result.

    If you can find a doctor to do these blood tests for you, plus a full thyroid check, it would be a good starting point. They are available to be done privately through several lab sites.

    Hoping you will soon feel well again.

    Ps Are you vegetarian or vegan, as this increases the likelihood of low B12?

  • Yes I had all those tests and my b12 levels were low so I had injections, I also had the test to see if my body was absorbing b12 and hat came back ok, I no longer need b12 injections but my folic acid is always low they can never get it up even when I'm taking folic acid, the tablets also make me ill o I can't take them for too long. I eat healthily too. I also suffer low blood pressure and I can't eat anything high in sugar or my sugar levels drop which is the opposite of a diabetic

  • They've told you that you no longer need B12 injections? How long ago is it since you had an injection? The test to see if your body was absorbing B12, was it an intrinsic factor blood test? If so, that is notoriously unreliable, and will give many negative results before you get a positive one.

    I believe that your B12 needs to be re-tested, and your doctor should be re-examining your low folate. There is a way to increase this using methylfolate rather than folic acid tablets. This makes it easier to absorb and digest, as you obviously have issues with folic acid tablets.

    Do you eat plenty of green vegetables, broccoli, kale etc... these are good sources of folate?

  • I've had many bloods taken this year, it was last year my b12 was down but this year they seem to be ok or so the doctors say but I also take b12 spray too so maybe that's why. I eat plenty of greens I have many chicken dinners with broccoli too. Last time I went to the doctors she said we aren't doing your bloods again because we've done them over and over again so I doubt I'd get any joy if I requested more 😕

  • Well that is a shame, you are using a B12 spray though, so that will raise your levels. Maybe have a think about trying a methylfolate supplement, and add in a good B complex supplement, to keep all your B vitamins in balance.

    I hope you will find out exactly what is going on with your health. My own situation began with underactive thyroid, then I added in Pernicious Anaemia and fibromyalgia. It's sometimes hard to decide which illness is causing which symptom.

  • Hi, I'm Helen. I think the first thing to note is that doctors don't know anything. I hear your story and it sounds like you are talking about my life. Really. I'm 54 this year and I too have been in and out of my doctors all my life with pretty much the same complaints as you amongst other problems too. As a young girl I suffered for 13 years with severe edometriosis and pelvic inflammatory disease and every 18 months I had an operation to laser away the endometriosis but it kept growing back. It started after the birth of my son and continued until the age of 32 when I had a total hysterectomy and had to go onto synthetic oestrogen.

    I suffered with fatigue, migraines, cluster headaches, muscle weakness, insomnia etc etc just like you all my life. I lost two jobs when I was in my 20's because I was too ill to work, nowadays that would be seen as unfair dismissal but not 25-30 years ago.

    When I turned 51, my doctors insisted I came off the HRT (oestrogen) because they said I was a high risk for breast cancer so I did what they said and over the two years that followed my pain got worse, my headaches got worse, I got more tired and more fatigued and slept less, and when I did sleep I still felt fatigued in the morning not to mention the pain I was suffering all over.

    I used to enjoy a nice massage but in recent years I can't endure even the slightest touch without feeling excruciating pain.

    I try to exercise as I'm trying to loose weight, but I have to physically push myself to do it because it tires me out so much but it's important i loose weight so I stick at it. I have lost 3 stone but I have more to loose.

    Then last June I was involved in a car accident when someone drove straight into me (I had right of way), and I suffered whiplash to my neck, shoulders, back and pain in both wrists. I've been having treatment but I feel like I'm in more pain now than I've ever been before and the exercise has come to a standstill so I've put loads of weight back on again.

    I also needed to have an operation on my right shoulder because I had so much fluid and inflammation, there wasn't any room for the nerves and tendons to pass through so I've had to have a bit of bone shaved off so the fluid could drain and the inflammation heal. Since then I seem to have hit rock bottom and I can't get back to the exercise, I've just been in too much pain generally and I'm sleeping most of the time. Oh and I lost another job when I went into hospital in November for the operation. This time I was self employed though so I didn't have a leg to stand on. Apparently they decided they were going to cope without me.

    In January my wrist and right thumb started selling up and I've since had an X-ray and I've now been diagnosed with arthritis in the first carpelmetacarpel joint which is the base of the thumb in the wrist probably triggered by the car accident although no one will commit to agreeing with that because I'm involved in a legal case against the driver.

    I also had an MRI on my spine which my solicitor arranged following the car accident and have been diagnosed with arthritis in my spine in L3, L4 and L5. Well L3 and L4 is apparently normal for my age but it's not normal to have arthritis in L5 at my age and again it's probably been triggered by the car accident.

    So I've been at the end of my tether.

    Then whilst at the swimming pool a few weeks ago I got chatting to a lady and I mentioned to her that I was diagnosed a few years ago with cervical spondylosis in my neck. And she asked me if I also have Fibromyalgia because apparently the two sometimes go hand in hand. So I started researching FM and I became convinced thats what I had. I learned that there a link between edometriosis and FM and a strong link between a lack of oestrogen and the pain associated with FM and that coming off the oestrogen probably didn't do me any favours.

    So when I went to get the result of my wrist X-ray I said to my doctor "I'm convinced I've got FM" and I went through all my symptoms and pains and I reminded her about various complaints already in my medical records and she told me that FM had to be diagnosed by a Rheumatologist but she was happy to refer me because I needed to see one about my wrist too. The swelling in my wrist and hand has been so severe I wasn't able to drive for 5 weeks.

    So I had my appointment with the Rheumatologist last week and he agrees he believes I am suffering with either Fibromyalgia or Polymyalgia Rheumatica but before diagnosing he wants me to have a full body bone scan to rule out any other inflammatory condition. He also did a shed load of other blood tests which my GP couldn't do for other inflammatory conditions and in the absence of anything else he can diagnose one or the other.

    He is also going to give me a cortisone injection for my wrist to help reduce the swelling. And I have got a bone scan really quickly, next Monday so I'm really pleased that just another 3 weeks and I can start to get some treatment.

    So Piscesbeauty86, my advice is that you don't take any rubbish from you doctor. You are perfectly within your right to request referral to a specialist and you DON'T first have to be diagnosed by your GP. GP's are not capable of diagnosing anything if it's not a throat infection or a water infection. To anyone that disagrees with me I don't mean that literally, but most doctors just can't cope with something like Fibromyalgia or similar conditions because it's just not well documented and because it can't be tested for like many other illnesses. But that doesn't mean it's all in your mind.

    So please do yourself a favour and TELL your doctor you would like to be referred to a specialist. I suggest you do a little research first so you can tell you doctor exactly who you would like to go an see. Google search Rheumatologists within your local area. Read about their specialisms although I think most will diagnose FM or PMR.

    There are also many good Fibromyalgia services in hospitals around the country This is one for example but if you search Fibromyalgia Services on google, they will come up and you can find one in your area. Find one and TELL your doctor that you would like a referral to go and see one. You are within your right.

    If your doctor REFUSES point blank to refer you, telephone the FM Service and explain the problem that your doctor will not refer you and see what they say. They maybe able to offer some advice, but honestly your doctor cannot refuse you. If they do, see another doctor in that practice. There must be more than one GP in the same practice and you should be able to see of them.

    Don't wait for a doctor to make the decision because they won't.

    guysandstthomas.nhs.uk/our-...

    Good luck

  • Aww you've been through an awful time too! These doctors have a lot to answer for they send people crazy with the patronising ways! I shall take a look at that soon as I'm free. I've got a busy few days ahead but I will certainly have a read of that and I will research all about specialists because I'm not giving in anymore! And once I've got the help i need there will be complaints going in regarding 4 doctors because they should be allowed to treat anyone like this x

  • Perhaps also change your doctor too to another in your area. You can get reviews on line on the different doctors in your area. Can I suggest you change doctors before complaining though. This is my fathers paranoia coming out in me now. I just wonder whether when you make a complaint against a doctor whether all doctors in the area might then know that you made a complaint and perhaps prevent you signing on with them? Don't know. Maybe just paranoia.

    Good luck

  • Oh good thinking yes ok I will keep that in mind haha x

  • Hello,

    I think I have diagnosed myself as having fibromalgia as I have had pains in my legs for 10 years now and now it's in my hands and feet. I am 38. Have had X-rays done nothing came back and I also always feel tired and often exhausted for no reason. I am trying to surf the internet for solutions. Don't worry about doctors they rarely find what's right with you so I would give up or go private they will take you seriously there if you pay the money they have to and you have a better chance to be heard and taken seriously i know it's unfair but let's not analyse this too much. I have lots of experience in the matter unfortunately! The self treatment for fibromyalgia is lots of exercise. They say try Yoga twice a week for 2 months and see the difference. I know that when I exercise I feel better because apparently we lack a hormone in the body/brain which is produced when we exercise so we physically will improve as our muscles will get stronger and our emotional status should be restored with the balance of hormones back on track. I am taking this advice seriously because it is really helpful. The link is the NHS link fibromyalgia - Symptoms and it shows you the causes treatment, diagnosis, self-help. I am planning to follow the advice on the link because the gp's just say I have nothing. One day I went to a GP and said I had pain in my legs , he said show me your legs so I did and he went you have nothing! and told me to go. 10 years later I decided with this pain carrying on to have x rays and it showed nothing but I have now read that it doesn't show on x ray that is why you have to self diagnose. I hope this is helpful. Good luck x

  • Thank you very useful indeed hearing from everybody! It's been years of feeling isolated by the medical profession and it's awful x

  • I don't agree with self diagnosing unless it is followed up by seeking professional help from the specialists. I agree that the doctors are useless and they can only treat what is physical and in front of them and you do have to self diagnose in order to start the ball rolling, but always follow it up by going back to your GP and telling them what you have found out and request a referral to a rheumatologist.

    Unfortunately to even see a private consultant you need a referral from your GP so self diagnosing on it's own doesn't get you the treatment you may need.

    After I had 14 episodes of endometriosis when I was in my early 30's I knew what to expect pain wise. I'd literally just come out of hospital 3 weeks earlier but I knew how I should feel 3 weeks after surgery because I'd been there so many times before. I didn't feel like that at all, I felt like death. I went back to my doctor 4 times saying I felt awful and I was just hushed away telling me I would feel like death, I'd just had intense laser to cut away the endometriosis. The doctor said you've had major surgery, they've not just skimmed the surface, they've cut deep into your tissue, it's going to take time for you to recover.

    But I knew I should be feeling different to what I was. I knew the endometriosis had come back or worse. In the end, I got in touch with my gynaecologist and told him the pain was just so bad I just wanted to die. He rushed me into hospital quickly to take a look and I was right, the endometriosis had reformed in just 3 weeks and I also had a cyst the size of a small orange. I was taken back in again the following week for an immediate hysterectomy. The day before surgery the consultant gynaecologist on the ward came to me and said 'so what are you here for', like he didn't know. I told him I was having a hysterectomy. He laughed and said 'don't be silly, we don't do hysterectomies on girls your age'. My father was livid at my treatment. He got in touch with my consultant who came to the hospital and he did the operation personally himself on his day off.

    Sometimes, yes, you need to self diagnose, but you have to do something with that information, not just not bother to go back to your doctor at all. Even if you are going down the self help route, having a firm diagnosis from a rheumatologist does make life easier in the long run. It does at least mean your GP may take you more seriously when you visit another time.

  • Hello,

    I wish to reply to this as I find it interesting and also think that too many people end up in hospitals or die from the result of non diagnostic from doctors and poorly timed referrals. The self diagnostic is indeed a very instinctive response from the human brain which should not be ignored and agree that it must be followed through and surely investigated further. The advice to follow up with a Gp is certainly the right advice but by listening to your body and researching causes and symptoms you are taking action and can go to the gp with relevant information for a referral. It does not imply not following up with a Professional of course :) I hope I explained well.

  • Hello Piscesbeauty86

    I just wanted to wish you a very warm welcome to the forum :)

    I agree with what everyone has said. You need a referral to see a Rheumatologist. They are the Consultants that specialise in diagnosing Fibromyalgia.

    It has taken so many of our members years and years to get a definitive diagnosis of Fibro due to the complexities of the condition.

    If you need any help navigating your way around the forum please don't hesitate to give me a shout.

    I genuinely hope you enjoy being part of the forum.

    Lu x

    Administrator

  • hello,I feel the same problem I think the doctors does not believe that this condition, having fibromyalgia is terrible.xx

  • Hello beauty86!

    What a good topic and what a sincere response from others!

    I can entirely understand that you are all displeased with the answers the MD give you, but you should understand their position. They are dealing with something they actually do not understand, and they are still obliged to give you some answer. Why is that so !? Because the classical medicine does not admit and does not recognize the existence of something that actually exists and was known millennia ago. I am talking about energy meridians in human body. If they get disturbed, many of the body processes change to worse, interestingly without too much change in the lab findings. There are thousands of posts in different forums, where the people have serious health issues, with a quite normal lab results. Unfortunately, the ancient knowledge about energy meridians seems to have been lost, even in China, where it originates from…

    If you make a little research, you will understand that in many other countries, UK included, there were in the past some approaches applied which reminded of Chinese energy meridians, but that knowledge seems to have been lost too. You may call it alternative medicine or complementary medicine or whatever, but there is something missing in the medical knowledge, leading to the fact that at least two dozen of syndromes and disorders are not explained until now, with the fair admittance from medicine doctors that they do not have the idea what it is all about.

    As for the tonsils, if I were you, I would not undergo the surgery because the issues you are having with your throat are definitely not connected with it.

    So sorry that you are having such health problems at so young age, but it may change in the near future. There are every day new knowledges at our, human, disposal, so why not in the field of fibro too…?

    Be well!

    Baraba

  • You know funnily enough I had to turn to Chinese medicine after I kept getting urine infections over and over again and antibiotics would make me worse so in the end I turned to a Chinese lady who told me about parsley boiled in warm water and to drink daily. That was 5 years ago and since that I've never had a urine infection.

  • i would say pay attention to your environment . Your clothe, the surface you touching . The quilt and the bedding . You know if something like heavy metal or acid or some comtamination there , you touch them but you can't see . I believe you , beause i had same expirence. Try to do clean up after u get home, wash your clothe and use the individue wrapped detergent . Find an environmental doctor to have aphisical check.

  • Hi, sorry to hear this. I have had a similar experience for 15 years, I'm 30,and only got a diagnosis for Fibromyalgia today. Basically, docs ruled out autoimmune conditions by means of blood tests and MRI of spine. All clear, so doc said I have Fibromyalgia. They have to rule out everything else. All my bloods were always normal too, and 2 years back I fell so ill and I was so weak and completely brain fogged, that I kept fainting. My body would just shut off. Was horrible, and I lost my job and couldn't work for 6months. Make an appointment with your GP and ask DO I MAYBE HAVE FIBROMYALGIA? And see how they respond. Might send you to a Rheumatologist and Neurologist. It is horrible to keep worrying and I know exactly hoe you feel regarding being undiagnosed and made to feel like a hypochondriac. It is horrible. I would cry many times, and even at times think maybe it is all in my head, but it is not. The pain is very real, and the tiredness and brain fog can be massively debilitating. Hang in there. And push for a diagnosis. Once you have a diagnosis, you can start your treatment plan. And that makes the world of difference, as you now have a direction to work towards. Good luck and I will be thinking of you.

  • Yes next time I go in I will suggest it to the doctors see what they say. I've completely lost my voice since Sunday and I'm having tonsils out Friday coming so I will get that out of the way first and then try my luck one more time. If they refuse to accept it I will have to pay to see a specialist.

  • Hi there what ur experiencing is real I am new to this forum when you feel others are listening to you hopefully you'll not feel your alone I think many of us have been fobbed off I was lucky at last to get a doctor that actually listened and diagnosed I feel for you havin had this from a young age have you had much in the way of family or friend support . I hope you have we are listening it's horrible to struggle good days then bad and always nice people take care xxx

  • I have so much support from family I'm friends I'm very lucky without them I don't know where I'd be! Oh gosh I had my tonsils out yesterday I'm in so much pain right now hence why I've not been on here much! It's horrific xxx

  • Hi there how are you today any better guess your resting up swam only 18 meds length had fairly good day Saturday now laid up post malaise they call it every time I try this happens I wonder if your see a change now ur tonsils are out any virally things I get do attack my throat so I understand the lady saying not too have them out but you sound like uve really been through the mill keep chatting when your better problem shared hugs sentvxxxxxxx

  • I have the same problem with doctors and the only thing i can do is to be persistent .

    Its not all in your head , you are not a hypochondriac , and you are also not alone .

  • Hi, beauty86!

    Sorry to hear that your tonsils are out and that you are in so much pain! So sorry that you have not listened to my advice not to take your tonsils out. They play important role in preventing illnesses, so you should have left them in place. Now you have an irreversible alteration of your body, but you can live without tonsils also, as many others do. It only shows how much you have been fed up with the issues you are having with fibro and other syndromes. One must understand it…

    There are numerous things I would like to talk to you about, but it is not for public use. IF you are interested, send me a private message, please. You will be surprised by my knowledge about fibro, but because my research work is not over as yet, it is not ready for broadcasting.

    Sorry about the grammar! English will stay for ever a foreign language for me…

    All the best to you!

    Baraba

  • I had no choice baraba I had such awful infections and abscesses in my tonsils it was becoming a real health problem I was told I had to have them out. They were so badly scarred that I couldn't even eat food without it getting lodged in my tonsils. I know I'm in a lot of pain now but once it's all healed up I'm sure life will get easier where my throat is concerned. Wish I could have left them there to be honest but they were causing major issues. So I guess I had to do what was necessary 😐

  • Same here, most doctors won't believe me! Stay strong, you sound like such a courageous, hard-working, determined woman. Doctors can be so full of themselves. I had to give up seeing them a while back. I hope your pain goes away.

  • I have had the same issue. From early on I've known there's been something wrong. And finally I wrote to my doctor. That was the only way I could get through to them and they referred me to a rhuematoligist. I really hope you can get some answers.

    Good luck

    Ann Marie

  • Hi, fibromyalgia is a horrible condition, it's one you can't see, so therefore people think you are making a fuss over nothing.

    When my fibromyalgia flares, how I describe it is like having an abscess all over your body. It knocks you off your feet, and you feel like someone has poleaxed you.

    I was diagnosed with this 19 years ago. I have learnt to manage the fibromyalgia, and not let it rule me.

    When it's bad, I pamper myself, rest when I can.

    Take paracetamol 2 + 2 ibuprofen. I have refused all other drugs (that didn't go down well with Doctors).

    I practice Mindfulness and meditation this has become a way of life for me, and really helps.

    I never do high impact excersise, but I do gentle walking at a pace I can cope with.

    On the days I'm feeling well, I make the most of this time but never over do it.

    I still work, there really is never a day without pain, but besides all that I enjoy a good life.

    Good luck, I hope you find a way forward😊there are plenty who can really relate, understand and listen to where you are coming from.

  • It's horrible it really is! For the last few days after having my tonsils out it's knocked me so hard it feels like my arms and legs are burning inside and they feel so heavy and achey. I'm also very irritable right now which I know is unfair on my family but I can't help it everything feels like a mission.I take paracetamol I've done it for the last 10yrs but it's now turning on me it's causing my stomach to hurt and my skin to break out in acne and it's gone so oily. I tried not taking any for a few days but immediately the pain gets intense so I'm in a no win situation right now! I'm going to demand the doctor refer me next time I go in because enough is enough now I'm sick of being told it's all psychological 😕

  • I really hope you get that referral, it's so important to feel listened to.

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