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ME advice please

Posted , 6 users are following.

debbie39903
debbie39903

Would really appreciate some help and advice please. I am 44 years old an suffered a TIA about 14 months ago...recovery has been very slow and over the last 6/8 months symptoms are getting worse. Am physically exhausted but yet can't sleep...some nights cry through frustration as I am so tired yet can't sleep. Am in physical pain every day, getting out of bed becoming an effort, feel like I have been hit by a bus, suffer daily from very strong pins and needles in my left foot and muscle spasms which feels very strange. Suffering from a lot of memory loss, forgetting peoples names, leaving oven on, leaving keys in door, pin numbers, phone numbers and lots of other stuff which is driving me crazy. Even finding walking up stairs an effort, fallen a few times, it's just like my co-ordination just goes, dizzy spells and feeling queezy most days. Also started getting a high pitched ringing in my ears. Hate being a burden to anyone and am trying to deal with this on my own and playing down everything. But getting to be a real struggle and getting worse every day. Seeing my doctor next week but don't want to seem like a hyperconderact. Any help/advice would be really helpful. Thank you

1 like, 13 replies

13 Replies

  • Ravenwood
    Ravenwood debbie39903

    Posted

    It is quite possible that you have ME/CFS. I would have your doctor run a few tests just to make sure it isn't something else. ME/CFS will end up being a rule-out diagnosis, given that your doctor will probably have no idea what it ME/CFS is. Once the doctor is sure something else medical is not going on, then see if you have a doctor familiar with this disease near you.

    The basic treatment for the disease is 2 take it easy and not do anything. You want to stay within your energy envelope. Every time you get out of your energy envelope, you're going to get sicker. And it is quite possible, that you will get sicker and stay sicker. There are a few medications that can help if you are suffering from pain. You will have to find out what you can tolerate.

    Oh. To see if you have ME/CFS, you need to see if you have post exertional malaise. What this means is that when you do some activity, the next day you feel worse. Most people when they do some kind of activity, find that after a night of sleep they feel better. However we find that after we do something,we are sicker the next day. That is defining factor to determine if you have ME/CFS.

    Don't let the doctor put you into some kind of exercise program if you think you have this disease. It will make you a whole lot sicker. Often doctors want to do this, because they think that exercise improves everything.

    I hope I helped you. Take care.

    • debbie39903
      debbie39903 Ravenwood

      Posted

      Thank you really appreciate your reply. Defo feel worse if I do anything...even shopping seems to leave me floored for days after. In some ways it's a relief to think they may be a genuine reason for this....thought I was actually going mad.
    • Ravenwood
      Ravenwood debbie39903

      Posted

      I think everyone thinks they are losing their mind when they get this disease. It's like you feel like you are dying everyday, but don't. And no one can see how tired and in pain we really are. Invisible illnesses are terrible.
    • debbie39903
      debbie39903 Ravenwood

      Posted

      Totally, just been trying to deal with it and put on brave face, but becoming so hard everyday. I did think I was going mad, just forgetting simplist things too. And even walking up the stairs becoming an concentration effort as have fallen few times, it's like my mind just goes blank and loose all coordination.
    • Ravenwood
      Ravenwood debbie39903

      Posted

      So, true.  Just a suggestion.  Don't hide how you feel from yourself or from others.  When you are feeling sick, let people know.  Let them help you help yourself.  With invisible illnesses, people can't tell how bad it gets unless you tell them.  

      For the falling, I use a cane.  I know it looks a bit weird, people look at me funny since I am a 44 year old woman using a cane.  But, hey, it keeps me from falling over in public.  I also use a wheelchair when I am so I tired I can't move anymore.  It also makes shopping easier.

      Take care of yourself.  

    • debbie39903
      debbie39903 Ravenwood

      Posted

      Thank you I really appreciate your replies. Bit emotional to realise it's not just me. Thank you again.
  • jackie00198
    jackie00198 debbie39903

    Posted

    Since you've had a TIA, maybe some of your symptoms are from that. Especially since you have so many cognitive issues. When you see your doctor next week, and mention these symtoms, he should be able to tell you if they're typical for a TIA. Your doctor is there to help you, and you need to have a frank discussion with him. You are not being a hypochondriac. Two of the main hallmarks of ME/CFS are post-exertional fatigue, and general fatigue that goes way beyond the norm. For example, when I take a shower, I have to lie down for a 1/2 hour. Even when doing nothing, I generally have a deep level of fatigue that prevents me from leading a normal life. If you don't have these two symptoms, I think there's less of a chance you have this illness. Go to the "solve ME/CFS initiative" website. They have a lot of good information about this illness, and you can see if the symptoms they list resonate with you. However, again, your situation is more complicated since there may be overlap between symptoms of ME/CFS and TIA. In the meantime, in case you do have ME/CFS, you need to take it very easy and pace yourself. Don't try to push through the fatigue, or your chances for a recovery may be impacted.
  • bronwyn97278
    bronwyn97278 debbie39903

    Posted

    Hi Debbie; I agree with all that has been said from others; am just going to add that if you "have ringing in your ears", this needs to be checked out, as the "loss of balance" could be as a result of someithing going on in your Middle Ear/ Eustacheon Tube.....(tube that runs from ear to nose and keeps our equilibrium.....you know how you have that "blocked" feeling when landing in a plane?).........as for a TIA causing your lethargy, it should not unless you have had a full Stroke since then.......have you noticed anything similar but long-term affects?....Those of us that do have Fibro/CFS often complain of tingling and numbness in extremities.....for these I use TED stockings/Tubigrip......although it is not documented that we have Circulation problems, the symptoms are the same, here, too....using the above certainly help me...(my worst times for this is when lying down for more than half an hour....the pain in muscles and numbness set in).....when you are speaking with your GP tell him/her EVERYTHING, and if nothing shows up from tests, a referral to a Rhuematologist is the next step........hoping this is a little use..............good luck.........Bron
  • debbie39903
    debbie39903

    Posted

    Well been docs today...she was lovely. Took lots of time with me, had lots of tests done and agreed something defo not right. Referred for long list of blood tests and referred to neurologist. So although little anxious as she was quite concerned I do feel strangley better than I am not going mad.
    • Retriever
      Retriever debbie39903

      Posted

      Deb, you are not going mad but I know why you think you are. I hope you get some positive results from your Doc. However to find someone who shows some interest is a bonus
    • debbie39903
      debbie39903 Retriever

      Posted

      Thank you for reply. Doc was great, very supportive and said I shouldn't have 'coped' alone for last few months. Said it's defo a neurological problem by the tests and referring me as urgent case. Feel like I have done 4 hours in a gym followed by 8 hour run today so will be glad to get to bottom of it. Gone a little into overdrive with post it notes to make sure I turn oven off, lock door etc. Lol. Thanks again
  • Retriever
    Retriever debbie39903

    Posted

    Putting stickers around is a good start. As a suggestion do things in order, link one item to the next. I would be very  interested  in the results of your tests. You havn't been cured but at least you have found someone who is taking you seriously.

     

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