Are M.E and fibro the same thing?

Hi Guys, i just wanted some advice on the above. Is it the same thing? Most websites I go onto have conflicting statements so I'm not sure. Any thoughts and advice would be much appreciated

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  • No, as far as I'm aware they are different. I was first diagnosed with ME (chronic fatigue syndrome) back in 1999 (I'd had it for longer, but the docs wouldn't listen to me and kept fobbing me off). At that time, I had slight aches in muscles but the main symptom was incredible fatigue - my legs felt like they had lead weights attached to them and I could hardly lift them off the ground to walk.

    Then, around 10 years ago, I started getting a different kind of pain - like it was deep in the joints. I had several tests to rule out things like rheumatoid arthritis and then they said this was fibro. Actually, I'm not convinced it is fibro as other people have said that their pains are different from mine - they seem to have nerve pain, burning/tingling sensations, which I don't get - but either way fibro is characterised by pain whereas ME is characterised by extreme fatigue. But, of course, you get fatigue with fibro too - so the lines between them are quite blurred.

  • Hey,

    Thanks for your reply. I agree the lines are very blurred. Have you pushed to find out if it is def fibro or not to make sure you get the correct treatment?

    The pain takes my breath away at times but it's the extreme exhaustion that I find the most difficult to deal with. I totally understand the whole legs being attached to weights! I'm still working full time which I find increasingly difficult. Xx

  • "Have you pushed to find out if it is def fibro or not to make sure you get the correct treatment?"

    That's a good question - with a very long answer! I have pushed, but it's been a difficult journey. Initially, I was only diagnosed with fibro by a rheumy doing the 18 tender point test - no other tests to rule out anything else. I found out from the FMA-UK forum that the docs were supposed to rule out other things first, so I pushed for more tests which I got and which proved negative. Because I have other symptoms too, such as dry eyes/mouth/throat/skin/hair/etc, they tested me for rheumatoid arthritis, lupus and sjogren's syndrome - came back with negative tests in each case.

    However, I was sure the pain was deep in my bones/joints - and, recently, a NHS physio I was referred to for my shoulder pain has confirmed that I have osteoarthritis in my upper spine and neck. Recent X rays have also shown OA in my ankles and knees. These are all the places where I have the pain. So I do feel now that I've had OA all along - even though they've said no to this initially. However, I may well have fibro too - since this would give me the increased sensitivity to pain which I certainly now have (I never used to be sensitive to pain - used to cope with it quite well).

    The other thing I've investigated is possible thyroid and adrenal issues. This is a very long story, but basically the NHS only does one test for thyroid issues (TSH) and will only treat based on the outcome of this blood test, not on symptoms. I have all the symptoms of hypothyroidism (eg. pain, fatigue, hair loss, dryness, etc) but my TSH is within normal range. So I took matters into my own hands and consulted a private doctor. He thinks that my thyroid function is actually fairly bad - and my adrenal function is even worse (they won't test that on the NHS - well, not for me anyway). So I'm now supplementing with things to help my thyroid and adrenals - I'm noticing some small improvement but not the improvements I'd really hoped for, so the jury's out for me on that one - I'm simply not sure any more.

    Good luck with your attempts to get the right treatment. It is a long journey we have to undertake with these "invisible illnesses"!

  • Ah yes "invisible illness" indeed! Reading your story sounds so similar to mine.... Describing the pain as deep in the bones is how I feel.... Elbows, knees and ankles are the worst for me these days. Sorry to hear about the OA, they're all interlinked in some way so perhaps you do have fibro also. It can be hard at times can't it? Sounds like you've had a real struggle to get to where you are today. It's an ever increasing battle with people and doctors isn't it.... I look fine therefore I must be! Thank you, I'm hoping it'll show something just so I can have more answers. Xx

  • Ah yes "invisible illness" it is becoming more apparent that the only ones this illness is invisible to is the mindset in western medicine.

  • What are you supplementing with your thyroid? x

  • I'll message you.

  • I also have deep joint pain but have always wondered whether it is caused by my osteo or by the fibro isn't it comfusing when there are so many overlapping symptoms.x

  • It is, Rosewine. I've seen somewhere that joint pain *can* be a fibro symptom, but most of the people I've spoken to via forums say that their fibro pains are different to mine. I don't get any of those burning/tingling/skin crawling sensations other fibro sufferers describe. Plus my pain is constant in exactly the same places (feet/ankles, knees, upper spine, shoulders, neck) - it doesn't change from place to place like most fibro sufferers report. This is why I felt sure my pain was due to something else. I was actually quite relieved when the physio said my upper body pain was due to OA - at least they've started to take me seriously now rather than fob me off!

  • Hello

    My thoughts on this are that with Fibromyalgia, chronic fatigue can play a big part of the condition, but I would say pain is the major factor.

    With ME/CFS the main symptom is chronic fatigue and all that goes with being unbelievably tired and exhausted all the time.

    I have both, so am just speaking from my own personal experience.

    Hope this helps

    Lu xx

  • Hi there,

    Thanks for your reply. I have fibromyalgia and I've had it for around 10-12 years. Only diagnosed 5 years ago. But lately, the last year or so, the tiredness is unbelievable. When I first wake up in the morning I can hardly speak or get out of bed. Then the tiredness throughout the day hits me so bad to the point where walking is an effort. Just feel like my whole body is made out of lead!

  • It could well be that you have developed ME/CFS. Have you been to see your GP?

    You could ask him/her if you can be referred to a Rheumatologist for further help.

    I have to point out that I am not a doctor and am just giving you my opinion.

    I would highly recommend that you go and see your GP.

  • Hi,

    Of course I appreciate the advice:

    I'm currently under a rheumatologist and I'm having an MRI scan today. There's just times I feel I'm not taken very seriously.

  • I know that feeling extremely well! You are definitely not alone with that feeling.

    It can be exasperating at times.

    Good luck with your MRI

  • Thank you x

  • It was explained to me that Fibromyalgia is ME but with more pain.

    I know that is very simplistic and many ME sufferers may know better but that was how it was first explained to me.

    I did one day a week CBT course for eight weeks which gave a better explanation to me. It stated that Fibro,ME were all on a broad spectrum and each individual fell somewhere on that spectrum. Each of us could move down if we received the proper treatment or up if we did not. Plus the amount of time we had the illness although many sources say it does not get worse, in my opinion it does with muscle wastage (maybe due to inactivity) side effects of tablets and the amount of effort it takes to keep a positive outlook on life, especially amongst family and friends. Plus Fibro rarely comes on its own, I have spine problems, restless leg syndrome and diabities to keep it company!

    I think the important thing is to remember to treat the symptoms however they present themselves as neither illness is curable.

  • I was part of a research programme and had a positive results for Epstein Barr virus in my blood that leads to CFS . All people with ME have CF but not all CFS is ME.

    ME is very specific but there is a lot of shamby diagonised . I also have under active thyroid and a few years ago told I have fibromyalgia .

    Lots of illnesses make you tired and in pain.

  • Hello Macca88,

    You may find this post of interest;

    healthunlocked.com/fibromya...

    You may also find other posts if you wish to by using the search bar

    Hope it is of interest :)

    Emma :)

  • Many people on the site seem to have both. I do think it is confusing when there are so many overlapping symptoms but I think with ME the primary symptom is overwhelming fatigue rather than the muscular and burning pain.x

  • I can see that you have had your question answered so I will just sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • I have Fibro and my OH has ME, the differences I can see is that he will be absolutely drained at times that he cannot operate at all without a sleep. His energy is a lot lower than it should be but he does get joint/muscular pain and always has with it. I on the other hand, would be tired a lot but not to his level but I have constant pain whereas his comes and goes. Other than that I can see no real differences :)

  • Hey, thanks for your reply :) it's interesting to hear another persons perspective. There's time I feel like i have both, I find it difficult to function and when I went on holiday I had to nap to be able to do anything. Sorry to hear you're in constant pain :( what do you take to relieve this xx

  • Sorry don't want you getting the wrong idea :) i am in constant pain but it is bearable without any meds other than amitriptylene for the most part except when I am having a flare. I was just trying show the slight difference between my hubby and myself :) I count myself quite lucky that I am not as bad as some :)

  • No it's fine :) thanks for your reply. It's really good to hear others stories xx

  • Fibro spine problem diabetes rheumatic heart valve RLS and nerve damage here so I can't tell you what is what. I do see many of your questions have been answered so like Ken I wish you the best of luck! If rheumatologist can't help you might try neurologist. Hugs

  • Hi ,iv had ME since 2000,, and I could still work ,as long as I paste my self ,but I would sleep for hours on end ,then got hit by the car 2010 ,slowly iv got worse so for the last 2yrs iv been bed bound ,no energy what so ever,pain in my joints that is well above a 10 ,I get hot sweats when it's cold ,and cold sweats when it's hot,brain fog ,peeing problems ,thyroid ,fine,speech problems ,the treamors ,balance problems, hearing loss, swelling mouth ,lips .

    Concentration gone ,short term memory loss ,IBS ,migraines ,food Allergies ,hair loss , pressure pain ,can't sit or lay in the same position for long ,it hurts ,stiff joints ,can't move after 3/4 minutes being in the same position. Not sleeping for 48 hrs .,an then i do sleep ,i wake up every 2hrs.I cant even get in the Shower and wash my self or my hair ,and I haven't the energy to dye my hair ,you should see my roots ,awful ,I was a hairdresser,so this isn't me ,I'm proud person c,this really does kill me being like this .Endeometrosis not spelt right sorry, has been mentioned ,iv had that ,and loseing babies ,had that as well. if I try an do any physical things like house work ,all I can manage now ,is wiping my work tops ,and cleaning my loo.and I'm so house proud ,it kills me not to be able to clean.

    Also iv always worked since I was 15 ,and when I had my daughter, I never stoped ,now ,I can't do anything, I have tried so hard ,but I'm just to tired an in so much pain ,even doing this email is hurting my arm ,fingers ,elbow,shoulder,its all hurting .

    FIBROMYALGIA is worse than ME ,in a different way .

    Love an Huggs to All

    Love

    JACQUI xx

  • Hi Jacqui,

    Sorry for the delay in replying it's been a rough few days. I'm so sorry to hear of your struggles, my thoughts are with you. It can be awful, I understand that. I hope you get some days that are better than others. Hugs xxx

  • Hi Macca 88,

    Thank you for replying to me ,to be honest I can't remember when I posted .

    My memory is AWFUL .

    Kind Regards.

    Love an Huggs

    JACQUI x

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