Does this sound like ME (sorry for long post)

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Hi, I am afraid I have got very anxious and depressed about my illness and getting a diagnosis/treatment.

My illness started suddenly about 2 yrs ago in Dec 2013. I felt like I had the flu coming on just befor Christmas 2012. Constant fluelike/hungover type headache, fatigue that came and went in waves and lasted about 3 hrs. Tummy problems, nausia, bloating etc. Symptoms continued over Christmas and into Jan. Visited GP early in Jan, who said I had a virus and it would clear up in a couple of weeks - it didn't.

Lots of blood tests followed (sorry not sure of exactly what) all normal.

symptoms carried on in a similar way over the next 6 months, the main symptom being the permanent flu/hangover type headache 24/7, as well as occasional fatigue.Throughout this time I had enough energy to go to the gym 4 times a week and work out quite vigorously. At the same time as undertaking some quite physically demanding DIY work and an active social life.

During this first 9 months tried various things like cutting out gluton, accupuncture etc. By the Autumn of 2014, the symptoms were getting more intense especially the flu like head ache and lightheadedness, nausia + some vision focusing problems. I consulted new GP (due to house move) not very helpful.

By January 2015 visited new GP again and insisted on a thorough examination, when it was found I had a heart murmor, which resulted in heart valve surgery in June of this year. Many of my symptoms we wrongly attributed to the faulty heart valve. The Op was successful but all the symptoms continued. GP decided it was probably an inner ear problem, so because of long wait, I went privately to get this checked out, all ok. 

In the past couple of months all symptoms have got worse to the point where I can barely function and following a severe dose of Food Poisoning in Nov I am very fatigued (although I did suffer from occasional fatigue, it has not been a signifcant problem until the past few weeks)

My GP is now convinced that I have ME/CFS and has just ordered the following blood tests:

Bone profile

Creatine Kinase

C Reactive Protein

FBC

Liver Function

Magnesium

Vitamin D

Immunoglobins & Electrophoresis

Transglutaminase

IgA

It is good to be getting the blood tests, but if they come back negative

my GP says I must have ME/CFS. I am not so sure - what does everyone think?

 

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  • Posted

    Dear Robert. I am no doctor and cannot say if you have ME or not, it sounds like it, but a number of diseases can sound like ME, so it is good that you are finally having a proper check. The fact that it goes on does sound like ME but again, could be others.

    A warning, if it is ME you must not go on having such an active life. A percentage of people can make their ME worse - permanently - if they keep pushing. Your body will need to rest up.

    I can only say take care of yourself, and best of luck with it. Also keep in touch as much as you need to, if you have ME you have sharp corner to turn in your life, until you learn how to accept and live with it.

    Use us for that.

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  • Posted

    If all the tests come back negative then they may say you have ME. I got a confirmed diagnosis from an ME consultant (went privately)

    As Tidsel said, if you do have ME you can't lead such an active life. That was the mistake I made for many years trying to fight it and getting into a constant boom and bust cycle.

    Almost 2 yrs ago I had enough and decided to treat my ME as if I were training for a marathon and followed my GP advice of pacing. That meant finding the point where I could function without any adverse affects. It took a while to find that position and then I very,very slowly built up from there. I used cycling as my exercise, and for me it worked. I am well on the road to recovery although having a small setback at the moment but I think that is winter coming.

    All the best

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    • Posted

      Hi 

      Thanks for your reply. I wondered if you could let me have details of the consultant you saw privately. 

      Did you find him helpful?

      Regards Robert

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  • Posted

    I was referred to a neurologist because I had severe muscle problems, this also ruled out MS and other serious neurological conditions. Basically, after all these tests you are left with ME/CFS. If possible do a bit of research to ascertain if your health authority has an ME clinic ( or look on ME Association website as they lost clinics nationally). There is no magic cure and you will need to try and find what works best for you. 
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  • Posted

    Typically, with ME/CFS, the most common symptoms are the terrible fatigue, which is unlike any other fatigue a "normal" person gets; postexertional fatigue, which is fatigue after the most minor activity; sleep problems; cognitive problems; headaches. Many other symptoms are also common. It's very hard for me to imagine that you have this illness when only mentioning occasional fatigue. But I suppose you could have had a very mild case that was exacerbated by your surgery and extremely high levels of activity. With ME/CFS, if you do too much, you can make the illness a lot worse. It's good that your GP is ordering a lot of bloodwork--other illnesses must first be rules out for a diagnosis of ME/CFS. But there is no biomarker for this illness. If all the tests come back negative, you should see a specialist, preferable an infectious disease doctor or a rheumatologist. GPs are not typically equipped to deal with this very complex illness. In the meantime, get plenty of rest, pace yourself, and cut way back on you activity level. Also use the wonderful resources of the Internet to google the symptoms of ME/CFS and to see if they resonate with you. One excellent source of information on the Internet is The Solve ME/CFS Initiative. Best of luck to you.
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  • Posted

    Thanks everyone for your helpful comments. It helps to be able to discuss things with people that understand what you are going through.

    Jackie00198  "It's very hard for me to imagine that you have this illness when only mentioning occasional fatigue"Thats what I thought - I have had most of the symptoms for 2 yrs with occasional fatigue, but since I had a severe case of Campylobacter Food Poisoning in early November I have been completely knocked off my feet by the massive fatigue as well as my other symptoms getting worse. I agree with you, the open heart surgery will have taken a lot out of me, then the Campylobacter on top, could have exacerbated a mild case.

    I will come back with my results when I get them.

    Robert

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    • Posted

      Hi Robert im glad your doctor is ruling out otherr things and checking your blood tests. I was diagnose about 18 yrs ago now and i think you probably do have M.E./CFS   You must slow down a bit, its like keep hitting a bruise all the time. Another thing to bare in mind is you could have a fungal over growth known as Candida which make you feel similar to having M.E.  Unfortunatley doctors dont test for this  but it can make you feel very unwell and affect any aprt or parts of your body so would be a good idea to cut out out sugery food, yeast, white pasta and rice too. have you a kenesiologist near you, its the only way i found out i had this as well as the M.E.    Look up candia on google and compare yoir symptoms.  To many antibiotics vcan cause this too.  Having food poisoning, and heart surgery will have def taken it out of you of course and not that long ago either.  Do let us know your results.

      Take care

      Sue 

       

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  • Posted

    Hi Robert.  so sorry to hear re your health conundrum. you're doing the right thing by having blood tests completed to eliminate conditions with similar symptom presentation. from the list of tests you gave, you didn't mention having your b12 and Folate levels checked.  this is important, coz low levels of each can present with similar symptoms to ME/CFS/MS etc. ppl with low b12 are often erroneously diagnosed with ME/MS. b12 is a treatable condition. 

    prior to the food poisioning, the ''ocassional fatigue'' doesn't point to ME/CFS. nor does being able to do such physical exercise.

    it might be (as another person pointed out)  a batcterial bowel overgrowth.  changing diet to NO sugar/carbohydrate would help this.  the MAP diet or/and the Paelontology diet are 2 of  such diets. do, however, read up as much as you can on both before embarking on either. 

    if it is ME/CFS 'pacing yourself' is SOOOOOOOOOOOOOOOO  important.  doing too much just degrades the body and new symptoms appear as stress is put on different systems of the body.  very often the new symptoms stay with us & exacerbate when we relapse through over doing or/and due to infectiions or stress  etc. 

    hope u get a diagnosis soon.

    all good luck on the journey.

    C

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  • Posted

    Robert I'm so sorry that you have been through so much. It sounds rather like me except I know thankfully my heart is fine. If the flu like problems have continued I think your GP might be looking for other related problems. Has your GP ever asked you if your double jointed? Do you still feel faint or light headed even now after your heart valve op? I think your GP I'd being wise in taking blood and testing you thoroughly. I hope you soon feel better but I would rest rather than over exercise until you get the results. One thing you might suggest to your GP if your tests are normal is B12 tablets to strengthen the nervous system. 
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  • Posted

    Thanks everyone for your comments and good wishes.

    Well my blood test results are back and all normal except for vitamin d, which the doctor says is slightly below the minimum normal range (sorry I don't have the numbers). Does anyone know if only a small deficiency can make you ill?

    My Dr says that ME/CFS is now the only credible diagnosis.

    I am still having difficulty in accepting this, for the reasons stated in my original post. Although it is true to say that for the past couple of weeks I have experienced periods of massive fatigue for 3 or 4 hours at a time. This may happen a couple of times a day. I have put this down to the affter effects of the Campylobacter I had in early November. I also still have the Flu/hangover feeling 24/7 which I have had continuously for the past 2 years.

    I think I am going to have a lot of questions to ask you all about this condition and its awful symptoms. I will probably do that in a new discussion.

    Thanks to everone who has replied and bye for now.

    Robert

     

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    • Posted

      Thank you, so much for reminding me of that. I know I need to be possitive, I am just feeling a bit low at the moment.

      Best Regards

      Robert

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    • Posted

      I don't think a small vitamen D deficiency would make you feel ill. Just remember: rest, rest, and more rest. Pace yourself. I know this is hard to accept when you've been so active, but I think it's a key strategy to getting better. And people can recover, especially in the first 3 or so years. 

       

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    • Posted

      I know this is a long shot but did you have a childhood disease like measles, mumps, chickren pox or glandular fever if you did certainly the latter tell your GP with the others or indeed any problem did you get pneumonia? It really needs thoroughly investigating so ask family members of they have RA or psoriasis, or PsA or Chrohn's, colitis or food allergies. Try to think about your past health, rashes, spots, do you go septic easily, could you have eaten something that caused a reaction, street drugs, believe me I have seen everything and so have most doctors, to coin the phrase every little helps! Good luck 🍀🍀🍀
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