Myalgia or Fibromyalgia

Hello everyone, 8 months ago I started having body aches. Went to my MD, he did blood work but all was fine. As time when on the body aches got worse. 4 months ago the body aches were so bad that I had to ask for pained medication. I then went to a Rheumatologists who also took blood and my results were normal. I then went to a Neurologist who took more blood and did an EMG and that came back normal. His final report was that I have Myalgia but he did not say it was Fibromyalgia. He put me on Lyrica which seems to be helping. It has brought my body aches down from severe to tolerable. But at times, I still have to take a pain pill. So at this point I have no definite diagnoses. He did find that I was low on vitamin D so I’m now taking a high dose of a prescription vitamin D as well.

My question is how does a doctor determine a person has Fibromyalgia? My symptoms are body aches, fatigue, I sleep a lot, and I’m sure I’m somewhat depressed. Are these the typical symptoms of Fibromyalgia?

The reason I ask is because I can no longer work and can’t get unemployment so I’m filing for disability which I know takes a long time to get approved. I think it would help if I has a specific diagnosis. Since I have no money coming in, I have to sell my house. When that money runs out what do I do then? Are there government programs that I can apply for? I’m male and 53 years old.

Mark

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  • Hi mine was diagnosed by a rumotologist all my syptoms were like yours he also did bloods and pressed certain places on my body which hurt maybe you could ask for a referral for a definate diagnosis x

  • Thanks for the reply Crissy, I did see a rumotologist but all he really did was blood work. It was odd that he said that I could see another rumotologist if I wanted to. He seem to refer that rheumatology was not an exact science and another rumotologist might be able to give me more info. Also, I don't have specific places on my body that hurt. I just hurt all over, like the flu but the pain is severe. Maybe I will get a second opinion with a rumotologist. My MD, Rumotologist, and Neurologist have all but given up on giving me an exact diagnosis. They say, “take this pill and see if you feel better,” and if that one does not work they choose another. It’s so frustrating.

  • Hi Mark, fybromyalgia varies a lot from person to person and there is no one definitive test for it. Often a diagnosis comes after everything else has been ruled out. I do know that vitamin D deficiency can cause joint pain so that may well be a contributory factor for you. My GP told me I had fibro after doing a pressure point test, which you will find if you google for it. There is also a lot of helpful advice on here and the information side of the site which you can get to by clicking on the yellow butterfly at the top right of this page. Good luck, Linda

  • Thanks Linda, I have been getting the feeling that once they rule out everything else they pin the fybromyalgia diagnosis on you. I just hope the goverment will see fybromyalgia as a true disabality. I will look at the information on this site.

  • Hi Mark,

    as you have been told, Fibromyalgia can affect us all differently. You have found a lovely , supportive site as I am sure you have realised so hopefully you won't feel so isolated with all the pain, etc you are experiencing.

    Hugs

    Jillyxx

  • Fibromyalgia is recognised by DWP & it is possible, depending on the severity, to claim DLA & ESA. I had to leave my job & now rely on benefits to survive

  • Thanks for the info Libby. I have a lawyer that my doctor suggested to help me with my disabality claim. I'm just started the process. How long did it take you before they approved your claim?

  • Thanks Libby. I will bring up each of these departments with my lawyer when I see him tomorrow. Perfect timing.

  • Hi Mark, are you based in the US? You said MD which makes me think you are...if so Yikes ( member of this community who lives in US might be able to help with your questions.) I am UK based and have fibro and vitamin d deficiency like you. I've also read that low vitamin d can cause muscular and joint pain, fatigue and headaches. Do you know what your vitamin d reading was?

    I know of a family friend who had to stop working as hers was so low and it made her very ill. It was 29 and should be about 75 I believe. So I'm hoping that once my vitamin d levels are up that will help in part...I wish the same for you.

    I'm so sorry you are facing selling your home. This is a lot to go through alone. Do you have support?

    Take good care of yourself,

    Zosie xoxo

  • Hi Zosie, if I'm reading my lab results right it says the value of my vitamin D is at 17.3 - Unit ng/mL. Then it gives a range of 30.0-100.0 L. So since my doctor put me on a high dose of vitamin D it looks like I'm at 17.3.

    With respect to support, I have family but my daughter is pregnant with her first child and the last thing I want to do is make her worry. My brother calls every few weeks but when I tell him what is going on it feels like all I'm doing is complaining. All he says is hang in there. So that's the extent of my support from my family. I have started to see a therapist so I think that will help.

    Thanks for the info, and to everyone who has replied to me, thank you. After I sell my house I don't know where I will be living and to be honest that scares me. I will get some equity but not enough to buy somthing else. So I guess I will have to rent until my money runs out. By then I hope my disability will be approved.

    It tough having to sell everything I have worked for due to an illness. Right now I'm taking it one day at a time.

    Thanks everyone.

  • Hi Mark

    Welcome to the wonderful world of Fibromyalgia. Fibro is a 'syndrome'. It's what they diagnose you with once every other illness has been ruled out. But do not give up hope. Have they tested your thyroid for hypothyroidism. Same symptoms. Best to have this ruled out. For the tests you need stopthethyroidmadness.com. Look at diet, another important area of fibro. With fibro everyone is different. Use the internet and do your research. I wish you well on your journey and pop inhere for support.

  • Lizzie, when I first started having body aches I went to my MD and he found out from my blood test that I have an overactive thyroid, so he put me on a one pill a day medication. It didn't help with the body aches at all but now my thyroid blood test are in the normal range. Is the thyroid usually a symptom that goes with Fibromyalgia?

  • Often people are diagnosed with fibro when in fact part of the cause is the thyroid. I was one of those. Told i had fibro and to go away and 'manage it' and take sleeping pills and pain killers. I had severe fatigue, aching all over and couldnt sleep. My theory is that the body doesnt just shut down for no reason, so i researched and then bypassed the doctors who had told me my thyroid was 'normal' and saw an endocrinologist who diagnosed me with Hashimotos Thyroiditis. I have been so much better, not 100% but prob 80%. Similar symptoms to fibro are gluton intolerance, leaky gut and candida. Just been tested and confirmed i have candida and leaky gut. So am working to put those right. Youd be surprised at how many conditions begin in the gut.

    Another cause which give similar symptoms is mercury poisoning. I am in the process of having my mercury fillings removed as my mercury levels are through the roof.

    I suppose what im saying is in my opinion, i dont think any one thing causes fibro and there is no magic pill. But i am determined not to spend my life on pain killers and sleeping tablets etc. im looking at the body as a whole and trying to fix each bit that could cause the symptoms. Once i have worked my way t hrough every possibility, i may still not be 100%, but i know i will have done everything in my power to heal my body.

    Its not been an easy ride to this point. Depression, frustration and tears are part of my life and a partner who doesnt really understand, but as long as there is hope, i will keep fighting to regain my health.

    I am from the UK so cannot comment on what happens in the US. I wish you well on your journey and do think outside the box. Keep in touch in this forum, its a great source of ino and help especially if you are feeling down

  • Some very good advise. It's so hard being tired all the time but I will keep going. I guess I should put a endocrinologist on my list of doctors to see. There is so much to do right now and I have no energy. Even my lawyer got frustrated with me because I didn't understand the paperwork he needs from me. Oh well. Thanks. I'll keep in touch.

  • Yes you're right, it's so hard being tired all the time. Make a list of things you need to do, and work your way through things one at a time, ticking boxes so you feel you have achieved something. Slowly but surely you will get there. I know it's hard but try and stay positive. Good luck

  • Hi Lizzy, I have just replied to Mark, I have a similar story to yours. It was good to read your story too Lizzy. :)

  • Hi there,can you tell me how to get tested for gluten intolerance,leaky gut and candida please?xx

  • Hi Mark,

    Lizzie gives very good advice, I had many painful Fibromyalgia symptoms and guessed that I might have it after 'Googling it' , three people on a Forum site also suggested I might have it too. One said to ask my Doctor about it, the other said not to as clever Doctors know that it is a symptom of Hypothyroidism.

    I had blood tests done due to my symptoms and they came back slightly off of normal, I was told I had hypothyroidism and put on Levothyroxine.

    Six weeks later my bloods were retested, they came back as normal, but because of my symptoms getting worse I was put on a higher dose of Levothyroxine and also prescribed a high dose of vitamin D.

    This still didn't get rid of my 'fibro symptoms' till I read that Levothyroxine is best taken at night on an empty stomach and 4 hours away from dairy foods/calcium. (calcium interferes with absorption.)

    All my 'Fibro' like symptoms disappeared within two days, with only a few twinges here and there. Now feel I have my life back again.

    I was lucky as my Doctor treated my 'symptoms' and didn't just rely on my blood test that came back as 'normal.'

    Keep wondering if I hadn't been diagnosed with Hypothyroid first, I would have been diagnosed with Fibromyalgia and maybe not cured so soon.

    This is my story, (remembering that everyone is different.) :)

  • Wow, your describing almost the exact same symptoms that I have, the Levothyroxine and the high dose of vitamin D. The only difference is that my doctor didn’t increase my thyroid meds. I think I will try taking my Levothyroxine at night instead of in the morning. I don’t eat much dairy (except for chocolate ice cream, Yum) but still I’ll try anything to get some relief.

  • Hi Mark, sorry for late reply. :(

    I was started off on 50 micrograms of Levothyroxine, then after next blood tests was upped to 75mgs due to symptoms not getting better,(even though bloods came back normal,) then later had vit D blood test as symptoms still not right. Vit D found to be lower than it should have been so was given 1,000iu of vit D to take daily. (I take vit D with food and several hours away from Levothyroxine after reading up about it.)

    2 days after taking vit D my sharp stabbing pains stopped, but were replaced by lesser aching pain. Another visit to Doc led to several bloods taken inc. vit b12 and Vit D again. Only vit D came back as low, but Doc said she wouldn't give me a higher dose as I was already on a high dose.

    In between waiting for my blood results I read on the forum site I had joined 'ThyroidUK' (another community site on HealthUnlocked on here.)

    I read that by taking your Levothyroxine at night on an empty stomach and 4 hours away from dairy/calcium foods that would give a much better uptake from the Levo.

    I try anything once :) so glad I did as all my head fog disappeared, I could concentrate far better, I felt I could exercise once again, exercise before only caused me more pain, :O oh! and no more bloating tummy, my weight started to disappear on its own probably due to me having more energy, even my weakened muscles felt they'd come back to life too.

    I'm not out of the woods yet as a few niggles and funny pain are creaping back, but I will either ask Doc for more Levo to treat my symptoms or if not I will invest in some more vit D, B12 (heard selenium might help too,) then experiment till I feel better.

    Do let us know how you get on and if you feel any different Mark, many others on ThyroidUK have said they felt much better. :)

  • Ps. Look up on ThyroidUK on HealthUnlocked and under the 'pinned notices' to the right look down the list to the 'Scottish Parliament' debate, and watch the video, (worth watching, so glad I did,) it will give you a lot more understanding/information about the campaign that 3 women started up and why it is so important.

    Also adding that many people are reporting that Natural Desiccated Thyroid Hormone ('Pigs Desicated Thyroid' which treats all the 5 Thyroids, not just T4- T3 as Levothyroxine does works far better, but not many Doctors will prescribe it, although it was around 50 years ago till the new synthetic Levothyroxine was on the market, this is also mentioned in the Scottish Parliament debate video.

  • Hi Mark,

    Myalgia is just another word for muscle pain, which is exactly what Fibro is, with the other symptoms that you are experiencing too. You ask how a doctor can diagnose fibro, there is a trigger point test which they can do (you could look online for Fibromyalgia trigger points to see for yourself where they are) which can give them a pretty good idea about what's going on. I am a bit surprised that the rhuemy you saw wasn't a bit more proactive.

    As dear Zosie mentioned we have another member from the States here, she may well be able to give you some more ideas of how you can get help over there. I will let her know what's happening with you and ask her to let you know what she thinks, she has lots of good information !

    Sorry not to be of more help, but sending positive healing vibes your way :-)

    Foggy x

  • Hi Foggy, what are these "trigger points" you are refering to. I have never heard that term before.

  • If you look up in your search engine fibromyalgia trigger points they will show you where they are. They are certain spots which react when touched and this can give a GP a pretty good idea that fibro is a likely problem, I think, and I am prepared to be told I'm wrong, that there are eighteen trigger points and if you get over eleven reactions, then fibro is considered to be a cause.

    Hope that helps a bit and everyone, please forgive me if I haven't got this right !!

    Foggy x

  • Hello Mark,

    I wondered if I could provide you with two links to the FibroAction website that will help you;

    fibroaction.org/Articles/Te...

    fibroaction.org/Articles/Ex...

    'The American College of Rheumatology (ACR) published a set of criteria for the diagnosis of Fibromyalgia Syndrome (Fibro) in 1990. For this, you need to have had pain in all four quadrants of the body (i.e. on both the left and right sides and above and below the waist) for at least 3 months. For the ACR criteria, you also need to have 11 out of 18 specifically chosen tender points' Lindsey Middlemiss quote from article link above

    I hope this helps

    Emma :)

  • Thank you!!!!!

  • Hi there Mark. I don't recall seeing you on here before, if you are new then welcome, If you have been on before and I've missed your posts then I'm sorry....it does sound like you have fibromyalgia especially if you have the trigger points that foggy is telling you about, fibro does mimick so many other illnesses ... Hope you get some results soon, and also as foggy says have a talk with another lady on here who comes from the US if that is where you are talking from.....sending you gentle hugs and healing thoughts and sincerely hope you get sorted ASAP.....Dee x

  • Hello Mark,

    You have had many long replies so I'll keep this short, just to add this link to our website that you may find interesting;

    fibroaction.org/Pages/About...

    'All about Fibro' is a series of Factsheets you can download & print for your reference.

    I hope this helps

    Emma :)

  • Thanks Emma.

  • Thank you everyone for all your support. It is very comforting to have people understand what I'm going through and can give me advise. When I had my first panic attack years ago, no one could relate to the irrational fears that I had. I felt very alone until I started therapy. So again thanks.

  • Mark you are definitely not alone, this forum is brilliant and so supportive and helpful.

  • Hi mark i am in the same boat. I have had ached and pains for over 2 years, I have had loads of tests but no diagnosis. I think the doctors are fed up with me

  • I can relate. Once, when I was first having problems I was talking to my doctor's nurse and telling her that I was still having problems. Her reply was that the doctor had run out of ideas and didn't know what to do next. I had to ask to be recommended to a specialist. I guess that's why they call it a practice.

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