1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

M.E. Returned

Posted , 4 users are following.

Retriever
Retriever

Has anyone had my experience. I had M.E. 20 yrs ago. I had a virus at Christmas and since then have never picked up. All the current symptons point to M.E. Has anyone  had a return of this illness after such a long gap. Another complecation is I am 78 years old although before the virus I was very fit. probably too fit for my own good. Never knew when to stop.

1 like, 12 replies

12 Replies

  • betty98863
    betty98863 Retriever

    Posted

    d

    Hi, I had M.E.fourteen years ago, and  returned just before christmas, I am 74 and fit and still working, but have had to give work up, I do think I am getting better ableit slowly, but feeling so much better than at christmas, so yes indeed it can return with a vengeance

    • Retriever
      Retriever betty98863

      Posted

      Thanks for replying. Time frame is about the same, perhaps I will start feeling better soon. Hope you continue feeling better
    • frank68910
      frank68910 betty98863

      Posted

      do you have any idea what triggers the return and do you seem like it is worse than before or about the same?
  • sueliz57
    sueliz57 Retriever

    Posted

    Hi, that is the nature of ME for many, many people it comes and goes and you're very lucky it has only now returned. However, it may also be the case for you and for Betty that you are still recovering from a nasty virus and that if you rest, eat well and look after yourself you will begin to feel better. Hope that is the case. :-)
  • Retriever
    Retriever

    Posted

    Hi Sue, Thanks for the reply, Good point and I hope you are right. Just got up from a good sleep, not always the case, but it doesnt seem to make any difference. The wife and I are struggling with the situation like everyone else but one thing we agreed from the start we would talk honestly. This does  help to know nothing is being hidden. Here,s to the future you have got to keep beleiving.

     

  • frank68910
    frank68910 Retriever

    Posted

    10 years ago I also had a virus and a form of cancer called Multiple Myeloma.  During treatment I was very ill and fatigued.  My doctors all said that I would regain my strength after treatment but I didn't.  I was told I had depression or a weakend imune system I ent to couseling for depression and took various anti-depressants with no help or even worse fatigue.  I noticed some days are worse than others.  I was told by a neurologist I had CFS but there was no real treatment and it would likely pass.  Now 10 years later I have terrible days and worse than terrible days and sometimes feel as though I was gu9nea pigged or in a blind study of some kind because I can't believe no one takes me serious.  I was very athletic and an accomplished musician.  Now I am pale and plain feel like I have the worst hangover of my life aqnd it never goes away.  I go to sleep with it and I wake with it.  I do not drink or smoke.  I spend a fortune on organic foods and do not eat sugar.  I had to give up most of my activities.  I developed a heart condition after ond of my pain doctors prescribed adderall(spelling) to give me a lift and instead I spend time in ICU with an out of control heart so now I take a drug called betapace that has many, many side effects from prescription drugs so anything I am prescribed the pharmacy says I cannot take.  I hope you do better than me.  I've had every test known including spinal tap-EEGs , Cat scans, MRIs, blood work 3 and 4 times a month-colonoscopys, endoscopys, tested for heavy metal poisoning-you name it.  Most of my doctors don't believe in CFS as a legitimate illness.  I tried to show my doctors research and they don't even read the data.  I am very upset, angry, hurt, bewildered. anxious, depressed and tired and in pain.  I would not wish this on anyone.  
    • Retriever
      Retriever frank68910

      Posted

      Frank I have replied to you on my discussion but I must add to my remarks, I just don,t know how you keep going or what you do with yourself all day. I have decided to stop fighting my M,E, it doesn.t help. I found if I went to bed during the day it was wrong. Now if I need to go I go. I am not sure it helps with the discomfort but it is one less thing to get worked up about.Once again good luck I really feel for you. One other thing which has happened to me is I couldn,t sleep over the last few months. Over the last few days I have a job to stay awake. Is this change a good sign who knows. Once again good luck 
    • frank68910
      frank68910 Retriever

      Posted

      thank you.  being a musician I sit up in bed and practice alot as long as my fingers work.  I have a care attendant who drives me to a recording studio and I hang around or I am a regular volunteer at a cancer clinic and play for them while people are getting treatment.  Those are my bad days.  Worse days I talk into a computer that captures every word for my lifes journal.  I have a sauna and sweat it out.  I read everything I can-Right now I'm reading My voice will go with you by Sidney Rosen.  I am a history buff.  I taught music for a number of years and keep in touch with my students.  I keep going because I do not know how to die, I suppose.  10 years ago I was given months to live-I was taking an antiviral treatment and chemotherapy at the same time.  I have or had AAML or Adult Acute Myeleodysplastic Leukemia and I have blood transfusions just about every week and a year ago last Christmas I was told I also have Multiple Myeloma which bounces in between Chronic to Acute and back to chronic to acute-my long bones and spinal column are slowly dissolving and then treatment was stopped because of heart.  I was not tolerating it.  It is slow.  I seriously considered suicide at a point but I was raised catholic and I have this fear of hell.  I also fear what my grandchildren would think and I can help them a little in life.  I know there are people much worse off than me-I see them at the clinic and at my age I lost a number of friends.  Life is not fair but how does one give up on it?  I wish I knew.  I cannot for the life of me imagine anyone who has nothig at all ever getting sick-I wonder what they do?  Do they go into a home and wait for death to take them?  I am not fond of institutions and do not think I would fit in.  The worst thing about this disease is we all look well.  Docotrs can't fix that.  I present to a new doctor and he has to ask me what brings me here, today.  I want to scream!  Read my record>  If I had some terrible disfigurement he wouldn't have to ask.  Where is our disfigurement?  YOu ever notice how when they ask what your pain level is and you say a 7 and they say okay, well where do you hurt and you say everywhere?  They want to narrow it down.  So I don't lie anymore and say 7.  I am at a 9 or more-9 means I made it here and more means I didn't.  I can function at a 9 but O God, what I would give to be a 5!  I can go kayaking with a 9 and some pain meds and then spend the next week in bed.  Can you relate?  Thank you for wishing me good luck.  I am happy you have a job and can go to it.  I play music to make ends meet and that to me is medicine and as long as my breath and fingers work I can tolerate this.  It is the getting up and getting dressed and the ride there and back that is so horrible.  Frank
    • Retriever
      Retriever frank68910

      Posted

      Frank. I am retired so don,t have to work, not sure I could. I can relate to your dark thoughts, its with me all the time. I p lan it all but don't go through with it. Perhaps someone up there knows more than I do. I understand your conflict with your beliefs I don't have that problem. I suppose I keep going believing I can get out of it again but I must admit t is wearing a bit thin. Your comments about grandchildren relate to my situation so we live in tis conflict. Should we think, why me probably not. Which one of us is going to get better first ???, Lets both get better sooner than later, if only.

      Once again good luck to us both and the other 250,000 in this country

    • frank68910
      frank68910 Retriever

      Posted

      thank you and I wish you all the best.  I am trying to find out as much as I can about the ME/CFS illness but I'm afraid I don't understand even when I read about it.  You didn't understand how I keep going and I told you.  I saw another doctor today and he was not interested that I found a forum for people who suffer with Chronic Fatigue.  His words exactly:  Maybe I should join it because I'm really tired.
    • sueliz57
      sueliz57 frank68910

      Posted

      How shocking of that doctor, most people just don't understand, that's why we need a different name, thoughi I'm not sure I like the latest idea: systemic exercise intolerance disease either!

      Chin up!

  • Retriever
    Retriever

    Posted

    I do see your point Sue but would another name make any difference. They are not interested because they have no answer to the problem. So be honest and say so, stop insulting us we have enough problems without these insults
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.