Diagnosis Nightmare

Hi I am new to this page, and I have not actually been diagnosed with fibromyalgia at the moment as they are still investigating my problems, but having had a look at some of the post I seem to have many of the symptoms. This all started about 9 months ago when I suffered from a very bad back, this gradually got worse and worse spread to my neck hips shoulder, and is very painful. I have always had pain in my back and hips since I was about 16 but it has been manageable, then when I was 25 I started having problems with my hands swelling, going numb, and pins and needles, and was told it was carpel tunnel syndrome. Then when I was 27 all these other problems started. I struggle to do the most basic task, and when I do I seem to suffer even more the next day. Every time I try and do exercise e.g. walking riding bike, the pain for the following few days sometimes weeks is so intense I really struggle to get through the days. I have a history of rheumatoid arthritis in my family so at the moment they are trying to rule out anything like that. I have had an x-ray MRI, and just this week been for a bone scan, but the x-ray and MRI didn't show anything.

The whole process seems to be taking so long, and I just want answers which they don't seem able to give me. When I go to my doctor she just tells me that I am young and that I will just have to deal with it and get back to work, (I haven't been able to work since this happened) and it is so upsetting as it feels like they think I am just making it up and lying about the whole thing.I wish I was then I wouldn't be in so much pain on a daily basis. I have been taking co-dydramol for months now but it doesn't really kill the pain it just seems to take the edge of the worst of the pain. When I told my doctor that the pain killers don't really work she said well you just have to go out and start exercising more. Before this happened I was pretty fit and worked out but now every time I try it means that I really suffer pain wise the following few days, and when I tell the doctors this they really don't seem to listen or care. They just say you are to young you just need to get on and live with the pain, but I don't feel like I can.

I constantly feel like they think I am making the whole thing up because I am lazy and don't want to work, which is just not the case. I am so tired all of the time, especially if I go out and do a few things I come back feeling like I have just run a marathon.

I guess I am just wondering if people have had the same problems with diagnosis, as I have found it such a frustrating time, not really sure what to do with myself. I don't even know what is wrong with me yet!

7 Replies

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  • Hi, I had the same problems as you when i was younger. My problems started just before i was 18 and it took me 4yrs to get diagnosed with fibro. Once i was diagnosed iwas left by myself to deal with it and get on with it!!! I think it really was down to the fact that the doctors i went to where older and maybe didnt really see it as an illness as such and the fact that i was so young. I did then change my gp practise as i moved and they where a bit better.

    I felt llike you thinking that the gps thought i was making it up as they couldnt see anything wrong with me ie from mri's,x-rays etc but it is real and your pain is real. You are NOT lazy!!!!

    I have been off work since march and should be going back end of month but i really dont see how i can as i still dont feel right, but my doc seems to think im ok. I am only 32 so in everyone's eyes i should be able to do a lot of things as i am young but i cant.

    Keep on at your doc. Have you mentioned fibromyalgia to your doc? If so what did they say? Isnt it so annoying when they tell you to exercise!!! Yes we all know that we should do some mild form of exercise but when we are in so much pain it is hard to even do the slightest thing.

    Keep you chin up and hope you start to feel better soon. If you want to talk any further you can always message me.

    Take Care

    Jo

  • Thank you so much for your response, if nothing else it is good to know other people have gone through the same thing. I was so upset after my last visit to the doctor that I have not been back to see her yet, she made it sound so simple, well your test results came back negative so obviously there is nothing wrong with you so just get back to work and stop going on about it. That's how it felt anyway, I just couldn't believe what she was saying to be it felt more like I was at a job centre than a doctors surgery telling me what jobs I am going to have to do!

    It was the rheumatologist that mentioned fibromyalgia last time I saw her, she said that if nothing shows up on this bone scan I just had this week, then she said that is going to be the most likely diagnosis. So I just have to wait for my test results to come through in a few weeks and then I hope I will know one way or the other.

    It is just such a horrible feeling the way they talk to you like your are just making up the pain and its not real! how do you deal with the pain? I have only really suffered since last October and obviously some days are better than others but unfortunately the bad days seem to outweigh the good ones. Exercise makes it worse and resting doesn't make it any worse or better, I haven't really found a way to deal with it.

    Thanks again for your reply and thanks for listeningx

  • Thats ok as i said above you can message me anytime if you want to talk privatly. Its horrible when you get doctors that make you feel as if it is all in your head when you know its not and people who truly know you will know that your not well and in pain.

    Take Care

    Jo xx

  • Be aware that Myofascial Pain Syndrome is commonly mistaken for Fibro and doesn't appear in blood tests or scans either. It is especially complicated because 1, they both used to be called the same thing - fibrositis and 2, most people with Fibro also have Myofascial Pain.

    But you can have Myofascial Pain without having Fibro. A physiotherapist with specialist training or a specialised myofascial release therapist or an osteopath are best for diagnosing this issue.

  • I went to the pain clinic where the Dr stood behind me poking & pressing me. It hurt so much I had tears in my eyes. I asked him what he was doing & he said NOTHING!

    I later read in copy of letter to my GP than I had fibromyalgia. I now know he was doing the test, but hadn't the guts or couldn't be bothered to tell me!

    Why do Drs treat us in this awful uncaring way?

  • I have never heard of the myofascial pain, but I one of my many symptoms is really intense pain in my shoulder and neck, and I sort of have spasms of pain in that area. But I also have a lot of pain all in my hips and back and that is just more of a constant ache. I don't think my doctor would have a clue about this after the way she spoke to me last time, so I think I will talk to the rheumatoligist about this when I get my appt through to see her.

    Thanks again for all of your in-put, it is so helpful, as I have been going for so long now thinking that they are not going to find out what it wrong with me, and that my symptoms don't match up to anything, so I really hope I am getting close to a diagnosis now, so I can at least try and deal with it.

    With Fibro do people find pain much worse the day after doing anything slightly out of the comfort zone? As my friend was over visiting from canada the other day and I was just sat chatting to her, and even just having to sit there I found extremely painful and could hardly move my head the following day because of the pain in my neck and back. And today after I was walking for a little bit yesterday I just feel like every bone/muscle in my body is screaming in pain! I feel so limited in what I can actually do.

    Anyway thank you all again for your replies, I really appreciate it

    x

  • If the rheumy looks blank at the mention of myofascial pain, try getting a physio referral. Unfortunately, many NHS physios don't have in-depth training in myofascial issues because this training is both time consuming and expensive. But many NHS physios can do the very basic forms of trigger point release at least.

    It is common with Fibro to feel worse after pushing yourself, which is why pacing gets mentioned as being important so often. Widespread pain as a reaction as you describe would certainly tie in with Fibro. But if you have myofascial pain, then stressing those muscles (even just holding your neck to sit and talk for a long time) will also cause an increase in myofascial pain.

    It is very very common that someone with Fibro will have myofascial pain as well.

    Best of luck with the doctors. Diagnosis is often a long road.

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