newbie, 81 years old

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I have had CFS since 1997.  Actually, I think it showed up a couple of years before that.  I'm now 81.  It is difficult to tell which symptoms are simply from my age and which are from the CFS.  I've also have a heart condition--A-flutter (like Afib but different) and had a mastectomy for cancer five years ago.  Bad neck due to whiplash in the 80's.  So how the heck does a woman figure out what is what?  Any other "oldies" out there dealiing with this stuff?  Any who have figured out what is what?  The docs don't seem to be able to do so  Thanks.

 

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  • Posted

    I hope this is okay.  I'm adding a line to my post.  What I really need to know if there is anyone in this forum who is, like me, elderly.  Please respond.

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  • Posted

    Hi, Phillis. Yes, I'm a fellow "oldie." I've had ME/CFS about as long as you have. I'm pretty clear about which of my health issues are due to ME/CFS. For instance, I have a back problem, but I can distinguish back issues from the tingling and nerve problems I have from ME/CFS. i can't tell you anything you probably haven't thought of yourself. That is, I'm sure you already know the huge number of symptoms that can result from ME/CFS. I just use that as my guide to understand my own symptoms.

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    • Posted

      I guess we just have to monitor our own problems and treat ourselves in whatever ways have worked in the past.  But, sometimes the tingling, for instance, or the wooziness, could be from the neck issue as well as from CFS, and there are times when I am not at all sure what is causing what.  However, since I don't have the energy to deal with surgery on my neck, I guess I'll just have to continue to slap on the neck brace, which helps, and flatten out.  

      So many things I would like to do, I can no longer do.  However, My family visit, I have wonderful neighbors, I live in a beautiful location, my house is paid for, I have a lovely little dog who is great company, and I love to read.  Therefore, I really can't complain and I'm not.  I just wondered whether there was someone my own age on this board dealing with this stuff, especially if that person is able to tell what symptom is coming from what problem.  It was kind of you to write, Jackie.  Thank you.

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    • Posted

      It sounds like you've come to a place of acceptance, which is a good thing. I, too, appreciate many things about my life. I have a great husband. I also love to read. I enjoy music and movies, and am grateful for a nice house since I am housebound. When I'm at my best, I can focus on the positives in my life. Sometimes, though, when I'm feeling really ill and misunderstood by others, I can slide down the slippery slope of feeling sorry for myself.

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    • Posted

      I am not  housebound all the time.  Today, yes.  But every few days I can get out to run errands.  However, I have hired people to help with house cleaning and lawn mowing. Fortunately, I've been able to find people to help quite inexpensively. That's a good thing because I now live alone.  But, as I said, I have a lovely family, and they are all good about visiting.  No complaints most days.  wink

       

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  • Posted

    I'm not in your age group but I wonder, have you tried Comfrey ointment on your neck Phillis? I don't know if it'll help but it might be worth a try.

    I grow Comfrey in my garden and make ointment with it and it's helped my back, a friend's shoulder and another friend's extremely bad back, where she was walking double over. My ointment had her walking normally in a few weeks.

    You could read up on it and make your own mind up whether or not to use it.

    You have a wonderfully positive attitude, expecially seeing as you've had it for so long. I've had it for over 10 years and I've found that with acceptance my attitude is growing more and more positive.

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    • Posted

      No, I haven't tried Comfrey ointment.   In fact, this is the first time I've heard of it.  Is it available in a store do  you suppose?  We have a very good store in town that supplies natural products and foods.  I'm certainly wiling to give it a try.  Thanks for the suggestion.

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  • Posted

    I am 70 and have suffered from M.E. since 1983.

    I anoys me when friends say it is my age when I have had it for such a long time.

    It has been worse since December 2014 since I had a fall and damaged my shoulder, but it is worse due to that  not my M.E. A bit of a coincidence if it is just to do with my age.

    I really wish I knew. If only if I could get back to how I was before my fall, which was bad enough, but now it is unbearable and very hard to live with.

    I do my best with resting and pacing as much as I can.

    It is the lack of understanding from others which I can't stand. I think they think it is all in the mind whcih it definitedly isn't. I try to explain, but think it just goes into one ear and out the other.

    Must have my afternoon rest now.

    All the best.

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    • Posted

      Some years ago, I found a very good article on Me/CFS that explained the illness in detail in language that was clear and inclusive.  I sent the article to my oldest daughter, who was living in Europe at the time, and she said that it convinced her that this was a "real" illlness.  Her words and behavior towards me changed for the better after that.  I wish I had kept a copy of the article.  I do know it was something I found online that listed the probems associated with ME/CFS and discussed them.  I also know it was from a reliable source or I wouldn't have sent it to her.

      She, in turn, talked to her sisters.  My family life improved tremendously after that.  I had sent articles to the kids before, but none of them did the trick.  Something about the way this one was written hit home--or perhaps my oldest girl was just ready to learn.  Before then, I am sure they thought their mom was just a whiner or going ga-ga. 

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    • Posted

      You wrote that you wish you could get back to how you were before your fall.  I do so understand!  I had a mastectomy five years ago.  The cancer seems to be gone and I am grateful for that.  However, the nerve damage and the lymphedema in my body are getting worse.  Then, when I had to have my heart shocked a couple of years ago, they placed the paddles right over the scar tissue from the mastectomy and since then I have been going downhill.  The pain is miserable!  I am becoming house-bound, and althought I am doing my best to stay positive, the last week has been very difficult.  I work at concentrating on what I have intead of what I have lost, as several members of this forum have said they also do, but when the pain is bad, that is hard to do.  So, why am I writing today?  I guess it is because I'm am losing my grip on positive thinking the last few days.  As you wrote, I just wish I cold get back to how I was before.  Just for a few days.  Just a break!

       

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  • Posted

    Hi Phillis I am in your age rang. I to found it difficult to decide how I should feel at my age. The whole exercise has been so confusing  I had M E some 25-30 years ago or did I. My wife found an article in a womans mag which my doc at the time jumped on. I forced my way back to work just short of six months and struggled for some time. I had to keep going and eventually I felt better. This time I had a nasty nasal infection last Xmas. Did I talk myself into thinking it was the return of M E. I don't know. My family told me I didn't look any where near as bad as I did the first time. So I decided to ask myself what am I really suffering from. The infection was still there, blocking my ears so thats what I touch to the docs. He is new to me but he did find infection in the inner ear which I am now taking anti-biotics for. He said I would feel tired until the infection is cleared up. As both my wife and I are in our late 70's we do feel tired early afternoon. I spoke to a lady who.s son  has M E he is house bound. I walk the paper shop every morning some 3-4 miles which doesn't give me any problem. So are my feelings to do with getting older be it with a nasal infections. Or is it ME who knows I will just continue taking the tablets. I know I have too much imagination so have I created this problem. Time will tell.

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    • Posted

      I am very glad you found an infection that was worsening your health--something curable.  Good for you!  And you  are able to walk 3-4 miles every morning?  Wow!  I used to be able to take my dog on a long walk each day.  In fact, I was managing fairly well until I had to have my heart shocked back into rhythm a couple of years ago.  The medication they used that was supposed to put me to sleep first didn't work.  I was wide awake!  I felt the shock and then I blacked out for quite some time.  I know I woke up in a different room in the hospital. Now that was a terrible stresser, and I've gone downhill ever since.  The medication I now take has nasty side effects, and that adds to the CFS exhaustion, etc.  Do I still walk the dog?  Most days--but no more long walks.  If I tried one like you are doing, I'd be found flat on the road by a passing stranger. :-)   In fact, I wear one of those medical alert gadgets when I walk now because I fell a few months ago when I was out walking the dog and took all the skin off my nose (literally), bruised my head, and sprained one wrist.  Keep on taking those morning walks as long as you possibly can, Retriever!  I am downright jealous!  :-)

       

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    • Posted

      I intend to keep the walks up. I am jealous you still have your dog. I lost my lovely retriever some six weeks ago. It hasn't helped my recovery but she has gone and I can't get her back.

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    • Posted

      I intend to keep the walks up. I am jealous you still have your dog. I lost my lovely retriever some six weeks ago. It hasn't helped my recovery but she has gone and I can't get her back.

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  • Posted

    Hi lovely folk

    I have had ME since around 1996 . Had to take ill health retirement from nursing.I am 59 so younger than some older than others! I am housebound and rarely get out . I can't travel far in a car . I moved house from London to yorkshire 2 years ago in November and have never recovered . We moved up here to be near my mother who only lived a 7 minute walk away for my partner . My mother sadly died unexpectedly only 7 months after we moved she was nearly 93. I think she was the only person close to me who truly understood me. I remain devastated by her death .

    I have heard of so many people with ME who have had shoulder injuries. I fell on the stairs twice about 5 years ago and had a,frozen shoulder that took 2 years to heal. Still have some lasting effects though. Plus have had cervical spondylitis for years .

    Is good to chat the others who understand .take care everyone x

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    • Posted

      Hi Janet. I'm so sorry about the death of your mother. My mother is 95 and lives about 130 miles from me. Part of the challenge I face is arranging for 24/7 caregiving for her while being so ill myself. Strangely, I also fell on the stairs about 5 years ago--these were the stairs of a B&B. I ended up in the ER with stitches on my forehead. 

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    • Posted

      Thank you Jackie for your kind words.

      I hope your mother is doing Ok. Is worry isn't it and moreso when so Compromised yourself.sounds like you had a

      nasty fall. I felt something tear in my upper arm when I fell. I also did something to my little finger on left hand. Sent completely black from top to bottom. I still be awful pain in it quite often. I think I may have cracked a bone or even fractured at the time because the joint is thickened .

      Take care x

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