Confused by symptoms

Confused by symptoms

I am feeling quite unsure if I have been diagnosed properly. Over the last 2-3 yrs I suffered with this extreme tiredness, where I had to lay down and rest even though not done much. I also noticed my hands would just hurt, that's the only way I could describe it. One doc thought it was fibromyalgia and prescribed me Amytriptaline to take at night as the body really hurt when turning. I was referred to Rheumatologist who did tests and he didn't think I had it but issued blood tests. Had Vit D Deficiency. Year or so on and symptoms seem to be back again, this time GP told me that recent Vit D levels are fine, therefore as the Rheumotologist put in a letter to my GP 2 yrs ago, he stated apparently that if all tests come back fine then he would say it is Fibromyalgia. The reason I am questioning is because I don't seem to have trouble with walking, I can walk around for short periods of time but do rest because of pain in the back due to my deformity in the spine.

After checking FibroAction poster, I can relate to a lot of the symptoms on there. Does anyone know if there are variants, or does it get worse over time.

Also, my GP just gave me a printout about it and sent me on my way, now I feel alone not knowing what to do. Should I go back to Rheumotologist?

Sorry to have gone on, but feel it easier to try and put most bits on at the same time lol

10 Replies

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  • I really think you should seek more help, Fibromyalgia is diagnosed by process of elimination as the symptoms are shared with other conditions, some of us have other ailments alongside fibro, so as I say seek more help and don't be fobbed off you need answers. xx

  • I would like to agree with lou60, and I also want to wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Hi Gill I believe that accumulative tests for conditions that continually come back negative or clear is part of the way fibro is diagnosed. This is where you might hear that fibro mimics other illnesses . At that time I suppose that your ruemy would have needed those last test just to confirm whether it was fibro. Had never put anything in writing like that casually. The other part of the test is the tender points. I have a lower lumber condition that pains me and stresses me so this can trigger my fibro pains as well. Maybe your back does this too. Really hope this helped and im no doctor but I do know that that is how fibro is diagnosed. Well here's hoping that your managing your symptoms as best you can do with what you know .

    By the way a course that your doctor can prescribe is fibro management of pain management these really helped me. x

  • I also only had pain in my hands to start with. The tieredness is mostprobably futig-syndrom, I have that too. The Docs won't find anything in your blood if you have Fibromyalgia! You can test that you don't have anything elce to be sure it's that. I took Amytriptaline as well and simply all other pain killers (wich buy the way don't help for Fibro), and it made me only more dizzy and didn't realy take the pains away. Now I'm trying Dronabinol. I must find the right dosis so that I'm not foggy or stonned, but it helps. The only problem is that you have to buy it yourself in Germany and it's so expensive. Streching and an ice cube on the back of your neck were your skul begins for half an hour helps, and keep away anything that isn't helthy, like Alkohol, to much meet and milkprodukts, sugar,or to much starch. Stay positive and keep those negative thoughts away. Well I'll stay in touch! Must go now.

  • Hi I would go back to the gp as it seems you have not been given much help. As royalspec01 said the main management courses can be really helpful. As far as symptoms go they seem to vary from person to person, most of my pain is in my upper back and hip area and then at times my hands and legs are bad. Fibro pain seems to move about for most people. Hope you get some help soon and things improve for you. Take care. X

  • Good morning Gill,

    I am not surprised that you are confused, This is the link to our mother site where you can read up on all things Fibro.

    fibroaction.org

    I also think that it would be a good idea to ask your doctor to refer you to pain clinic.

    Be sure to come back to us, there are sure to be a lot more questions that you need to ask.

    Sue :)

  • Hi Gill,

    My pain started in my hands then feet :) it took a lot of visits to the doctor and a lot of test and x-rays which all came back clear or normal. Finally I saw a brilliant doctor who poked a lot of very tender spots and said that everything else was ruled out and because the tender spots were sore it must be Fibromyalgia. It is a system of rule all else out before you will get a diagnoses as has been said.

    Best of luck and I am sure we will meet up again on the forum :)

  • Hi Gill,

    So sorry you are not getting the help or a proper explanation for what you are experiencing! Can I suggest, if you have not had a thyroid function test done ask for one, it could be an explanation for your tiredness, as Royalspec01 has said, there is no specific test that can diagnose Fibro, all they can do is test & tell you what you don't have, it's frustrating!!! also I think it was Lou that said, some of us have other conditions that seem to go hand in hand with Fibro, I hope this is of some help to you, take

    Care, gentle hugs Honor xx

  • Hello Gillc0312,

    Welcome to the FibroAction Community!

    Thank You for your post, hopefully we can provide some information that may help.

    Here is the link to our website about How Fibro is diagnosed;

    fibroaction-public.sharepoi...

    Plus this link about Knowing your Diagnosed;

    fibroaction-public.sharepoi...

    In answer to your question about being able to walk around for short periods of time, many people with Fibro can & others may not. The symptoms wax & wane, in my situation I was working for 1 year with hardly any symptoms, then in a wheelchair for 2 years back up to managing well for 3 years (still with flares) then recently had a virus & not as mobile again. This doesn't mean this pattern will happen to you (if you do have Fibro) but Fibro symptoms can be controlled and then people with Fibro can encounter periods of uncontrolled symptoms alongside flares in both circumstances.

    Fibro is reported not to be progressive however many people here on a poll said they had got worse over time. We wonder if their are factors to cause this feeling like other conditions contributing to the Fibro symptoms. You can find the poll if you search using the bar in the top right corner.

    However, it seems you may doubt your diagnosis so maybe you should speak to your GP about what was ruled out & tests done before diagnosis. Did you have a Tender Point Test? If you want you can ask for a second opinion of course and/or ask to see your medical notes (charges may apply)

    I hope this helps :)

    Emma :)

    FibroAction Administrator

  • Thank you to everyone for your replies, it really does help. I will go back to my GP and ask to be referred to a specialist so I can get exact answers. I have had many blood tests over last few years and everything always comes back Normal. Only once did my Vit D come back very low, but that is now normal and yet my symptoms seem to be flaring up again as they were when I first spoke to the GP. Thanks again all x

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