I have been back and forth to my GP OVER AND OVER are they not up to date with the condition fibromyalga,, they have no clue

my GP has finally sort of said I have fibromyalgia but because I have on one particular day only scored 9 points instead of 11 she will not say for definite that it is this condition. meanwhile I am getting fed up back and forth of being in constant pain, not sleeping hot flushes.. each symptom she describes as something else.. hot flushes, menopause, mood swings depression, migraines hormones. and many other things she makes me feel every time I see her I am wasting her time. really fed up if I get referred to a rheumatologist will they have the means to listen to me and make a diagnosis once and for all

13 Replies

  • So sorry that you're not getting a proper diagnosis of your condition. I think that you should try to get referred to a rheumatologist who can test all the 'pressure points' that will show that you have fibro or not. Your present symptoms fit with fibro, don't they. Or failing that, change your gp to one who recognises this as a real illness. This would put your mind at rest and allow you to cope much better, I'm sure.

  • Hi kes2008. I am a 51 year old female with fibromyalgia. I have had symptoms of fibromyalgia since I was 17, but was not diagnosed until it became quite severe. Once I actively began searching for a diagnosis, it took 4 years of back and forth doctor visits before I was finally told that I "probably had fibromyalgia" in an E.R. visit during a very bad flare. When I told my GP of the results of the E.R. visit, he basically blewme off saying that fibromyalgia wasa "cop-out diagnosis given when they didn't really didn't know what was wrong." Many old-school doctors still think this way, unfortunately. I would definitely recommend sering the rheumatologist as they should be able to make a diagnosis one way or another. They can due dome testing to rule out some other possible causes, and from your list of symptoms and a physical exam, be able to make a more accurate diagnosis. Many rheumatologists will still be reluctant to give you any strong pain medications, but will instead recommend exercise as the main treatment. My best help has come from a pain management doctor once I was finally "diagnosed" by a rheumatologist. I must warn you though that pain meds only offer "help" with the pain. They will not ever totally block your pain. Lifestyle changes like exercise, pacing your daily aactivities, making sure you get adequate sleep, etc., will have to become routine. You didn't mention anything about fatigue in your list of symptoms...do you have overwhelming fatigue that does not get better with sleep? This is a very big part of fibromyalgia. There is a very long list ofsymptoms that go with a fibromyalgia diagnosis. But a rheumatologist will be familiar with all these and be able to make a more accurate diagnosis. I hope this helps you a little...believe me, I understand how frustrating it is to get any relief from this syndrome of symptoms. I wish you well in your journey for answers. It can be a long road to a diagnosis. A diary of your daily symptoms for a month or more may help you in the process, along with at least a daily rating of the severity of your pain. Most doctors use a pain scale of 1 to 10 in rating your pain, with 1 being very mild and 10 being the worst pain you can think of. Even with pain meds and daily exercise and modifications in my lifestyle, my pain level averages to be a 4 or 5 on most days. Some people get great relief from exercise and this is enough to control their average pain levels. Others do not get that result. Fibromyalgia is different from one person to the next, and from one moment to the next!

  • Hi thanks for your reply . Yes I am always tied worn out can't sleep or have broken intervals of sleep in night wake up in pain and have pain on and off good days bad days more bad lately . I am finding it very frustrating as I was an active person . I have never really linked these issues I have had until I read about fibromyalgia and they all describe exactly what I have been going through but my GP said yes it prob is this but offered not help or advice . Past 4 weeks I have had soft tissue inflammation the dr said in my right foot arch but I now have discovers after doing lots of reading this is also part of fibromyalgia pain spots feeling really low and don't know what worse case scenario would be

  • Hi again kes2008. Yes, unfortunately with fibro, the pain can be anywhere and everywhere, and the adjustments in your life are very difficult and depressing. Remaining as active as possible is very important, but at the same time you must allow your body time to recover throughout the day. If you do physical labor for a period of time, your body will demand time to rest before you continue your activities. It's a matter of learning to pace yourself with rest/activity throughout the day. I walk about 3 miles every morning after soaking in a hot bath for awhile to loosen up my joints. I wake up extremrly stiff, if I manage to get any sleep, and I do a few basic chores early in the day, but then I need to lay down for quite awhile before I can continue. The length of my rest periods have had to increase over the years as some other conditions have developed in my body. But I constantly have to convince myself to get back up and try to do more throughout the day. Depression is a constant battle as the fatigue and pain get overwhelming and wear you down. But you must devote yourself to trying to prevent further problems with your health. Force yourself to keep up the exercise even on days when your hair even seems to hurt. It only gets worse and disables you more if you don't stick with your routine. You can choose activities that will not worsen your flare , such as walking in the heated pool at your local YMCA rather than using your stationery bike that day, or doing strength training exercises or a little yoga rather than a daily run, etc., but don't choose to just stay in bed and hibernate for a few days. You will lose strength in your muscles very quickly if you do that. Remember that fibromyalgia is not fatal, even if you think at times that you couldn't possibly feel worse. Insomnia can be a real problem. Do every thing you can to try a nd get quality sleep. This really plagues me, ad I can go for a few days with no sleep at all. Currently I have gone 2 days without sleep. I use a prescription sleep med, but still have to rely on other methods to try and induce sleep...such as taking a warm bath with relaxingoils and epsom salts every evening; sometimes I haveto add a couple benadryl to my medications to help with getting sleepy (even though my body feels totally exhausted); or I have tried using natural melatonin to try to get my body's sleep clock working; warm chamomile tea with a little of the herb valerian sometimes helps; or a good body massage from my husband dometimes does the trick. You just have to experiment to see what helps you, and sometimes you just have to wait it out. Eventually you WILL sleep, even if it's just a few hours. The same goes with your other symptoms. Talk to others with fibromyalgia and ask what works for them. You will get ideas to try yourself. And be sure your doctor stays informed of what methods you are using, so that you don't unintentionally do something that is unsafe for you. Be careful of using food, or other unhealthy things as a comforter. Staying at a healthy weight is very difficult when you can't be as active as you like. I struggle with this as I tend to be an emotional eater. I constantly hsve to tell myself that no amount of chocolate is going to take away my symptoms! Choose healthier methods of comfort- like a good heating pad or ice pack; or a journal to express your drea ms and frustrations. Remember you are not alone. If you have a local support group, it can be very helpful. Keeping a small cushion or pillow in your car can make your drive more comfortable, as well as the hard bleachers at your son's football game. A good occupational therapist can provide you with tools and tips to help make various chores easier. Try to use good posture rven when your back is killing you. Slumping or limping can cause you even more pain. Make sure you keep in touch with friends as these relationships can be a lifesaver when you are ferling isolated or alone. If you vent about how you arr feeling, make sure you give them a good listening ear in return. Sometimes it's the little yhings that can make a huge difference in how well you cope. Focus on being a survivor rather than a victim. Be sure to express appreciation to others around you. Don't unintentionally take advantage to those who help you or provide you with support. Think of ways to help them too, especially a life partner. Your praise can go a long way in helping them cope with your illness too. Make sure family time is quality time. It's easy to let your illness dominate your thoughts when you are tired and hurting. Try to keep involved with your normal activities the best you can. At the same time, don't beat yourself up if there are a few activities you have to let go of in order to get the extra rest you need. Stress will make everything worse in a hurry. Keeping up an exercise routine will help with this too. I don't know what else to tell you. Fibro is so different from one person to the next. I hope this gives you some idea of what to expect with chronic pain and fatigue. It will take time to make adjustments in your life, and it can be a lot to swallow all at once. Just remember the basics are proper rest, exercise, and pacing yourself. If you can get those 3 things under better control you will go a long way in improving the quality of your life. Everything else take one day at a time. Thst's really all you can do. I believe that God is in control of my life and He will help me through whatever else may come my way. Faith helps me a lot, but that is a matter of personal choice. I recommend seeing a pain management doctor. That's where I would start if I had it to do all over again. That is where I have found the greatest relief.

  • The advice you have given is excellent and I agree with all of it. I definitely agree with your last statement about God being in control of all things in your life. That's the thing which keeps me going, knowing that His way is perfect and even though I cannot understand all that I am going through, he is sovereign in all things. Coping with chronic pain is hard! Xo

  • Hello Bob here

    All I can suggest here is if your GP cannot give a diagnosis, and is fobbing you off ask to see another GP in the same practice.If this is not the case you can ask for a second opinion and a referral to a Specialist. in hospital.

    Some GP s will do this just to put your mind at rest so this may be another approach that you could suggest to Her.

    The main thing that is so important no one should suffer in pain without a diagnosis. and possible treatment.

    One thing I have noticed is, what medications is She giving you ??.

    All the best



  • Bob I am on diff meds she prescribes for diff ailments I have IBS so they prescribed amatriptalin I have back problems I had an inflamed SI joint and couldn't walk for 2 days so I was given tramadol and codeine I have high blood pressure so on propranolol and suffer badly with migraines have immagram nasal sprays And always suffering hot sweats which she said was menopause so on HRT all these ailments I have had for year s but only recently have I discovered that they could all be linked to fibromyalgia .

  • Hello kes

    Ask to see a specialist regarding this, of even another doctor. You seem to have a good spectrum of medications especially pain medications

    How I read this you want to put your mind at rest, that would be the way to approach this

    All the best, keep a hold


  • Because if I knew for definite what I am dealing with I can sort myself out but not having a diagnosis is frustration that's all I want is for GP to say right yea you have this . My nurse at work has even suggested that it is more like ME rather than fibromyalgia . Am so confused

  • Hello kes

    Bob Here

    It is no good worrying if it is ME, always look towards the simple before looking towards the bad, you will become full of worry and the condition becomes self fulfilling, Ask for that second opinion and get referred to a Specialist Clinic,. YOUR GP NEEDS TO DO THIS. to put your mind at rest

    My condition mimics ME please do not worry.

    All the best keep a hold, keep calm


  • Thanks for all that it has helped I am just glad I work full time As this is my reason for not giving up and staying in bed I love my job even though I am on my feet all day my supervisor is understanding and if I need to sit down for a break I do .

  • Hi Kes.

    The advice given by 24-7-365 is good and would definitely recommend that you ask to be referred to a pain management clinic.

    Unfortunately there are GPs who roll their eyes when you mention fibromyalgia. I did not even consider it as a possible diagnosis until I went to a pain clinic where the dr tested me for pressure points and I scored 17/18 ! The fatigue is a big big part of the condition and can be the hardest bit to deal with. Pain management drs seem to be more up to speed with the latest ways to deal with the pain. Sometimes GPs treat one symptom but do not look at the whole picture. Keep on asking until you get to someone who can give you some answers. Xoxo

  • Hey guys SOS been while back on here thanks for all advice .. Finally for a diagnosis of fibro from rheumatologist and was referred to a pain clinic which still waiting to hear from ... So manage things myself with resting and meds .. But I had a new symptom appear which I am not sure of.. Inflamed lymph area on collar bone region which when I am active swells up ands causes a tightness on chest .. I went to AnE with it one eve cause I couldn't breath and had pain across my chest . They did usual check my bloods showed inflammation somewhere but they said it was prob my fibro and sent me home will no explanation to what this swelling was .. Showed my GP who said it was fatty tissue .. Cheeky .. So I have referred myself back to my ENT doc to get this checked out as I have no faith in my GP at all .. Has anyone else had a lump swelling come ip around the collar bone area and neck please ..! And some others advice needed .. A position at work has come up for training supervisor .. I get very tired at works till people have told me to apply for it but I am worries the stress of it all will makes symptoms worse .. Any advice .....

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