New to Fibro

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I am was at my Doctors earlier this week and after numerous blood test was told I have fibromyalgia and IBS.

To me it’s a lot to take on, my doctor gave me a site to go on to read up on it so it helps me understand but I am struggling to get my head around everything. Does everybody struggle with the understanding of it and do your symptoms of it get any easier.

I apologise now for waffling on......

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  • Posted

    Hi Michele,

    I don't really understand why your GP would say that you have Fibro as it can't be detected through a blood test.  You really need to ask your GP to refer you to a Rheumatologist who specialises in diagnosing and treating arthritis and related conditions. They will arrange for you to have all kinds of tests, scans, x-rays etc and blood tests to rule out other possible causes of your symptoms and then may be able to  support a diagnosis of fibromyalgia.  

    Fibro shows itself in many forms, it's a strange disease, it can cause widespread muscle pain and fatigue, I've had it for a number of years along with Osteo and RA.  I've tried all kinds of meds, but unfortunately I'm allergic to most of them.  A Rheumatologist will hopefully be able to help you. x

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    • Posted

      Hi,

      ive had all sorts of tests to rule out anything else my problem with joint pain and extreme tiredness has been going on for about 18 months now. There are a load of tests that you have to go through and it really does seem like it’s not going to end. I should of said that in my post but I think my mind is going faster than I can write lol. 

      I have had tests for arthritis and rheumatoid arthritis because I have whole body pain and jumping legs, it’s the lack of sleep and lack of energy that I’m struggling with. 

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    • Posted

      I really feel for you Michele, I know how debilitating Fibro can be.   

      I'm wondering if it was a Rheumatologist who carried out the tests or your GP.    Your body and mind need sleep to be able to cope with the day.   Are you on any medication for this at all, some swear by amitriptyline to help improve mood, to relieve anxiety and help them to sleep better, which may help with energy levels during the day. 

      There are also natural methods to help with relaxation as Fibro breeds on stress.  There are some people on here who I'm sure will be able to help more with that side of it and hopefully some will come forward.  Hang on in there Michele x

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    • Posted

      Hi Sukes,

      yes the tests were done at the hospital by the Rheumatologist clinic.

      other tests were done to rule out celiac, thyroid, etc at the moment I have just started on amitriptyline but am also on Gapapentin which I’ve been on for a while.

      I’m guessing what I’m actually asking do you eventually get use to the idea that you’ve got a problem. When I have bad nights I often fall asleep during the day should I try and stay awake then maybe I would sleep better at night. Sorry with all the questions I’m just struggling to get my head around the whole thing 

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    • Posted

      Its diagnoses via testing for everything else for the most part these days. The old points test isnt used very much and from what I understand is widely considered to be unreliable.

       

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    • Posted

      Don't ever be sorry for questions regarding FMS.  It is not life threatening but as someone told me it will make you wish you were dead sometimes due to unexplained pain and often with no relief even with narcotics.  Sleeping disorders go with FMS and in my case not only was I diagnosed with Graves Disease (by product of over active thyroid) but also Sleep Apnea after being told I had FMS.  They operated twice to correct a deviated septum so I could use the CPAP but this last time the Septum collapsed so now I will never be able to use CPAP.  Sleep apnea once again gives the same symptoms as FMS.  Thyroid gives the same symptoms as FMS.  MS gives the same symptoms as FMS and there are several other diseases as well.  I'm just saying I think sometimes, based on my experience, they label issues as FMS when in fact its something else that hasn't shown up in tests but will sooner or later. If I had it to do over I would go to some Clinic like Cleveland Clinic and be tested from head to toe.  At least that's what they're supposed to do.  

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  • Posted

    i don't know how old you are but in my case I was diagnosed in my forties and am now 75.  In the beginning I fought it because back then the doctors thought FMS a crock.  I went to a Rheumatologist that helped me accept the diagnosis and like you I read everything I could get my hands on because the symptoms are life changing and seem surreal because they travel all over your body, causing exhaustion and severe cramps one day in the right leg and the next day in the left leg and on and on.  They say exercise is crucial to the treatment of FMS and I understand that but I can tell you after you exercise the next day your pain will be up a notch.  As I've grown older my pain has increased and I no longer fight pain meds.  It worries me that the government is fighting drugs using the manner they are.  I understand about addicts and yes pill pushers must be stopped.  But it appears they have NO consideration of people that are truly in pain - some days over a 10 on their pain chart. Like right now when I have severe pain running from my buttocks to down my leg.  Had leg cramps all night.  But since I've retired I have the freedom to give into it but if you are still young and need to work or have children I just say make time for yourself and don't feel your house has to be perfect or for that matter anything has to be perfect. Give yourself a break.

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    • Posted

      Hi Nancy

      I’m coming up 58, I have been on sites that they reccomended from the hospital and Doctors but it’s just getting your head around what it all means.

       I see you’ve had it a long while so I do feel for you I will try and pace myself in everyday things, I just want to get my sleep, jumping legs and the pain under control.

      Thank you very much for you advice very much appreciated 

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  • Posted

    I failed to mention that after a few years they found I had Hyper Thyroid and they used radiation to decrease the goiter.  Now I have Hypo Thyroid and that too causes fatigue and muscle pain and even joint pain.  One person that wrote in said they could detect with blood work but as explained to me the blood work helps rule out so really they back into the diagnosis just like I'm told they do with MS

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    • Posted

      Mine developed into Graves Disease and even with my thyroid in control, I still have symptoms that either be blamed on the Graves Disease or the FMS so my doctors tell me. My thyroid was removed and it should be easy to control but is not.  You are very fortunate. I just say everyone with FMS should have their thyroid checked because the symptoms are similar.  
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  • Posted

    Correction - The person writing in to you said they CANNOT detect FMS with Blood work and that's true. They can only use it to rule out other diseases. 

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  • Posted

    The blood tests that I’ve had was to rule out celiac, thyroid, diabetes etc, I also have IBS 

    thank you for all the information it really does help

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  • Posted

    I believe IBS goes along with FMS, at least everyone I know including those much younger than me that have FMS tell me they also have IBS. Make sure and watch your blood pressure because constant pain can cause stress on the heart my doctor says. Glad to know my experience helped you.  Hang in there as its especially hard when even now some don't take FMS seriously.  They did rule out Lupus right?  The symptoms are same with FMS as with Lupus but Lupus is far more serious regarding the damage it does to the organs.  

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    • Posted

      Hi

      i do beleive they have ruled out Lupus, the IBS I just have to control with diet.

      it is quite amazing all the help and advice that you get on here especially when like myself there will be other people I’m sure that will struggle with fibromyalgia 

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