Chronic fatigue, Lymes or Lupus

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I am 38 and since the age of 11, I have had no energy. I suffered from constant sore throats, slept for 16 hours a day and felt dizzy. After about 5 years they diagnosed Chronic fatigue. But all theses years later nothing has changed. I have muscle and joint pain, exhausted all the time, no matter how much sleep I have had. I have had constant skin complaints. Getting worse as time goes on. I have sore burning skin on my face. Looks like the butterfly effect that goes with lupus. But also had a rash last year on my torso that looked like lyme disease. After all these years, I just want to feel normal. At least know what I am dealing with so I can at least try different treatments. I have had test after test but the go cannot find anything wrong and aren't very helpful. I am at a loss of what to do.

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  • Posted

    I believe there are specific tests for Lyme and for Lupus. So if those tests come up negative, and nothing else comes up positive, you could well have ME/CFS. It is a diagnosis of exclusion. You need to see an ME/CFS specialist, like an infectious disease doctor. You really need someone in your corner who understands what you're going through. So sorry you're having all these problems. And by the way, though not discussed often, skin complaints are one possible symptom of ME/CFS, according to my doctor.
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  • Posted

    Yes I agree.. i have alot of lupus type symptoms too. WEird skin rashes and the burning sensation to my hands feet and face. This is infact Nerve pain . I would say you sound very much like CFS/ME to me.. Research it.. i had such a shock when i was finally diagnosed after 20 years. all my symptoms where there in one form or another. The reason we have so many IMune type symptoms is due to the fact that it is an auto imune disease, but for what ever reason its still not classified as one. All the latest trials/tests from right around the world show the same thing. Auto imune disorder that causes swelling within the brain and mainly brain stem.  Which is why we have so many symptoms right across the spectrum. I just wish they would all finally get their heads together... agree... and clasify it .. so then we can start and move forward.  
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  • Posted

    Hi, i think many people myself included go down the 'i must have lyme disease' route for a while with CFS. IF i do have lyme then i must be the unluckiest guy in the world as i have mad multiple tests all be extremely negative. I think CFS is what it is, a mystery, but that does not mean it cannot be solved. I've come to realise it is a personal thing and there are different variants of it. I can go out walking for an hour if i want, sure it won't be real easy but i can do it if i want, and for that i am eternalyl greatful, as i have been so much worse. There has been one supplement i have been trying and since on it it has helped me energy levels and not to feel as ill, it's called Glutacyan, Recancostat in the U.S. If you research glutathione and chronic illness most people are deficient in the bodies master anti-oxidant glutathione, it might be worth a go. A big part of CFS is mitochondiral deficiency, for whatvere reason. I came inot my CFSon the back of a few years heavy stress with job and athletic training. Still strongly believe i can make a full recovery.

    I would suggest writing letters to conssultants and saying you are not happy with your diagnosis and situation, i did this and am awaiting a second opinion which also mentions 'discuss theraputic options.' I know valtrex has been used successfully with CFS. Important to always try and move forward with CFS, to not let the illness take over 100% of your life. Maintain hope, it's what keeps me going.

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    • Posted

      Hi David. That is a very helpful note thanks. I have found the main ingredients of a cure are fortitude, perseverance, moderation, patience and close observation. The needed details emerge from these qualities.
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    • Posted

      Hi George, yes perseverance, determination. There's a great Rocky speech by Sylvester Stallone on youtube (search balboa inspirational speech) and although he may not be the greatest actor in the world this realy is true: 'aint nobody gonna hit as hard as life. It's not about how hard you hit, but how hard you can get hit and keep movin forward. that's HOW WINNIN IS DONE' !!

      So that's what i plan to do. Have been doing !

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  • Posted

    hi emma.

    i'm so sorry to hear of ur suffering & not having the appropriate help with differential diagnosis.

    re CFS/ME diagnosis: there's a clearly delineated CFS/ME symptomology criteria of symptoms. have a look at the 'NHS Choices' for this and the NICE guidelines for diagnostics/treatment. this will help inform u for ur next appointment with ur GP. that's if u live in the UK.

    this 'diagnostic criteria' of symptoms should be supported by 'diagnostics by exclusion' of other conditions with similar symptom pictures. for example SLE have a plethora of deferential antibody tests & Lyme disease has at least 2 specific tests - the ELISA and the 'Western Blot' tests.

    whilst there's varying degrees of accuracy with these, however, they help confirm/disconfirm each condition together with good history taking & the presenting clinical picture. a couple of double appoinments with GP maybe be necessary together with a 'focused' support person to help u expalin what's happening with u. you deserve & r entitled to this.

    exclusion tests SHOULD include: 1) Coeliac disease, 2) vitamin b12 deficiency, 3)vitamin D deficiency, 4)anti-body tests, amongst other tests. the fore mentioned have cross over symptom expression & need to be ruled out. many ppl with medium/longterm ME/CFS will be deficient in the fore mentioned vitamins especially d & b12. have a google of each. with depletion of either (or both)

    one can feel ghastly, and their correction measurably relieve the symptom load.

    with ur diferential diagnosis in place, if u have ME/CFS ask ur GP to refer u to the nearest special ME/CFS clinic. as far as i know most, if not all, have a GP experienced in ME/CFS attached. they provide a management program & on the phone advice too. there are also, other (non NHS) treatment programs available that look at mineral/vitamin/essentail enzymes/toxicity levels & metabolic pathway anomolies etc. that diagnose exactly what's deficient etc and treat accordingly. they are all longterm programs and expensive. hope that's helpful

    all good wishes Caitlin

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  • Posted

    Thanks for all your replies. I have tried everything from vitamins and minerals. Spiralina, Q10, even a SAD lamp. I could sleep all day and all night. I hate sleeping my life away its such a waste. Blood test after blood test show nothing. I even tried the Iv vitamin drip. I am not as bad as I was a few years ago when the kids were younger. Noise even physically hurt my ears and I couldn't even open a yoghurt pot. My skin is so sensitive, not just my face but everywhere even including down below. The doctors don't even know how to treat this! I have totally lost faith in the medical profession. The muscle pain I get just radiates through my body. I think I manage quite well considering but I have had enough of feeling like this.
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    • Posted

      Emma ask your GP for a trial of thyroxine ok all your tests came back normal but was everything tested prob not !!! Starting on 25 mg s thyroxine will not harm you it is a hormone replacement not a strong drug that you could become addicted to. It is not expensive so not a drain on the nhs .  It is 3 months since you posted just wondered how you are doing , did you go down the thyroid route ?sy 
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