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Difficulties with M.E. and frozen shoulder

Posted , 7 users are following.

alison44235
alison44235

I am really struggling with my M.E. and my frozen left shoulder. For the last three days I have felt as if I just can't go on. It is causing arguments beteen me and my husband. Since having my accident due to no fault of my own my life changed completely. My M.E. became 10 times worse I just cannot manage it any more, I had it under control before by pacing myself and resting as much as I could. I am unable to do my work which I enjoy. I work at home as a textile designer. I can no longet drive or ride my bike,

Today my daughter came to see us and at the last minute our son invited us for lunch it was just too much to cope with. Nobody new I was struggling, I just got so upset when I got home.

Sorry too tied to write any more.

Alison

1 like, 9 replies

9 Replies

  • Deb1982
    Deb1982 alison44235

    Posted

    I'm so sorry your family do not understand, I have 3 grown sons and for a long time they said it was in my head until one day I found a doctor on you tube who explained m e/CFS  in a easy way.

    i got so upset called them and said I needed to see them.when they arrived I told them to sit down and watch the video and left the room, when they finished I said nothing that was 4 months ago but now they are more understanding and help me.

    they never said anything about what they heard but things are easy now when I am unable to do much.

  • claire_73125
    claire_73125 alison44235

    Posted

    It's horrid at times isn't it? sad I've had one of those days too today. My kids think it's funny, oohh, must be past mums bedtime. My daughter was talking about her sports bra and I said mine hadn't been used in a long time and my husband was like 'you, sport, two words that don't go together'. I used to play rugby and stool ball and go to the gym. Now my bodies hurting all over after going to a leisure pool with the kids yesterday. I try so hard not to complain cos it's an everyday occurrence so that's all is do but it's hard. But sometimes it's a laugh or comment too far.

    It's hard isn't it when we don't even understand ourselves why we're like it. And as much as I don't want other people to suffer too, I do find comfort in hearing that other people have similar experiences, so I'm not going mad, they understand xxx

    Hope tomorrow's a better day xxx

  • bronwyn97278
    bronwyn97278 alison44235

    Posted

    HI Alison;   I really feel for you, and do know where you are coming from....been there too.  I once was a very active working Mum, raising 4 children + a grandchild, and runniing an ED ( which also included Shift Work)...and then WHAM...along comes ALL sorts of body issues....ME/ Fibro, etc;   at first I couldn't even accept it, and as No-one can acturally see what you are going through/feeling, it is Very hard for them to understand, and for you to TELL them how you are feeling !!  I then went onto develope a very bad Tendonites in L arm, which resulted in Major surgery, as I thought it would JUST heal, and tried to  ignore it too, and continued to work/use it.....eventually I began to just stand-up for myself, and told ALL "look, I just can't do this anymore"....and yes, it took many years for them to accept that....for probably all the same reasons that your family can't accept it either..".You've always been able to, why not now?"  but then as my older children starting researching and tellling/reminding my husband, that "Mum can't work/do..such and such"...I even printed out the information that I found (as I started asking questions as to why?), and left it "lying" around,,,,,it's taken me, and family/friends at least the last 5+ years that this is where I am at....(actuallly know that I've been unwell for at lest 20 years, but just kept struggling on)...if you can try these tactics, see an Orthopaedic surgeon for your Shoulder, and give yourself some TLC, you'll get there..I feel that because ME/CFS and Fibrmyalgia are all now becoming more recognized, that doctors and people are starting to believe that it's not in our heads...but even with that issue, I took myself off to a Psychologist to help sort it out in my head...and yes that was before I got to the stage of not being able to drive  distances (even though it physically got to me).  Actually, while writing this now,  it reminds me of the times that my children/family tried/thought they were "helping" me by taking me places, and how I felt having to say "I just can't go...it is too much"....and now it's also hard, for they all have their own busy lives, and that is why I am here on this computor, typing to others, as it's probably the only thing that my body will let me do....so you keep typing (when you can, as I know it must be hard only using one hand), and you WILL get through all this, as soooo many of us/others have......get back to us/me when you can.....Bron
    • alison44235
      alison44235 bronwyn97278

      Posted

      Thanks Bronwyn. I went to an orthpeadic surgeon last Monday. I had to go privately in the end . I went to an N.H.S surgeon  a month ago and he said it would be 4 months before he sent me to a shoulder specialist. If I don't have anything done it will never get better (I was told by the N,H,S, it would get better) I am going to have hydrodilation on 18th May. I am worried. If it does not work I will have to have an operation. My husband and I are argueing all the time, I can't stand this anymore, He is been thoughtless. He is a farmer and said he will never give up work I said to him if he had this shoulder he would have gone privately as it would have stopped him doing everything (like it has stopped me doing every thing I love) He says no he wouldn't, I just don't beleive it he won't back down over this. That is only one thing that we argue about there is so much more, he is so thoughtless.( I said I wanted to go privately 2 months ago)

      I aked my doctor to refer me to an M.E. clinic 5 weeks ago he still hasn't. I got an apology letter from the surgery and he still hadn't referred me after that so I am going to ring again tomorrow to find out. The N.H.S. has let me down big time this year, I have never known anything like it right from the day I had my accident over 4 months ago it has been one thing after another with them.

      To top it all this moring we have no hot water so can;t even have a shower to make me feel a bit better. I bought some walking boots a few weeks ago  as I am having trouble with my feet at the moment, I find they are not waterproof I was told they were when I bought them.

      It is just one thing after another.

      What I really want with my shoulder is a scan to see waht is going on in my shoulder my husband does not understand this and says listen to the health proffesionals they know what they are doing. i don't think they do, it is my shoulder I know how it feels and that it is not right and something is going on in there that need looking at before anything is done to it.

      I feel really angry about all this and very upset.

      My best friend is dieng of cancer and I feel guilty about myself being such a wimp. She has had it for 5 years, but I think that she might be near the end, I am not able to see her much as I can't drive.

      Alison

    • bronwyn97278
      bronwyn97278 alison44235

      Posted

      Yes;  there is much to be said re The Public Health Systems (in most countries), and this I really do believe after having worked in our's for over 30 years....and the reason I have always had Private Cover (as we all know, everyone has to learn their work through Practice, and this is where, unfortunately for people and their lives, medical staff learn their's)...I am surprised that you havn't had a Scan on our shoulder yet, though, even through the Private Surgeon...that/MRI is the primary first step for diagnosis (in Australia, anyway),,without that how can the surgeon know exactly what/how bad the shoulder is??  Question him/her on their reason for not requesting same. 

        As for the arguments, I feel that maybe your's, and your husband's, stress levels can be a contributing factor....and never feel that you and your husband are the only couple that argue....when you talk to other women, you find that we all argue...I say "it's because they are MEN, and we are WOMEN", and both sexes see things sooo differently, but so long as there is the love, you will both pull through this difficult time (you may even find that "deep" down, he could be really worried re you, finances...lots of things, and although that doesn't help you at this moment, we need to learn that they (men) always handle things differently to women: another thing I have learn't is "that men think re things...women talk re things"

         As to your good/close friend, please don't beat yourself up re not being able to visit as much as you would like, for if you think about it, your friend is also probably very tired/tires easily....so regular/daily phone calls maybe just as good for her...so long as you let her talk how she is feeling/coping, and not let/have her worrying re you..she probably already knows that you are in pain, and also prob knows re you and your husband....try and get your shoulder better, so that you can be there for her, (and her family?),  when it Really is the necessary time....does this make sense for you?....Bron

    • alison44235
      alison44235 bronwyn97278

      Posted

      I am surprised a scan wasn't suggest. I was so tired when I saw him as it was the afternoon, so could not think of everything to say to him. My husband new i wanted a scan, he said nothing. He says that he felt as if the consultant did not wan thim to be there (how selfish) He has knocked all the love out of me. I just pretend now. It is a very long story about lack of his support over a lot of things in our marriage.

      My friend is brilliant and is always asking how I am and knows what I am going through. We text nearly every day.

      I have just been for a walk trying to think things through.

      Alison

    • jinny23
      jinny23 alison44235

      Posted

      Hi Alison

      I just wanted to say stick in there!

      and to let you know, my GP was no use to me at the time I needed support; I think because she had just had a baby and she wasn't really up to it. but hey, who am I to judge by at a time when you need support most, you tend to fight for all you can get.

      I decided to take things into my own hands and went online, found a centre for ME locally

      and emailed them. I understand thus was in Kancashire and , just maybe, I was lucky.

      They eventually replied and sent me a detailed set of forms to fill in and email to my doctor. those firms and full blood tests got me in.

      12 months later I was visiting the Centre and arrangements were made for me to see someone locally (NHS) and I am now in my 3rd month of going along to one to one sessions.

      It's more of an education than anything else because I firmly believe only YOU can beat it.

      I am lucky,I know. Not everyone has the opportunity but we should !!

      Good luck Alison

    • alison44235
      alison44235 jinny23

      Posted

      I am going to change my GP. I could have referred myself to the ME clinic and gone privately, they suggested going through my GP. I have had it for 32 years and have managed it myself ,but now it is so bad i thought I could do with some help.I hope once my shoulder is sorted if ever I should be able to amange it again, otherwise I just don't know what is going to happen to me. Thanks Alison
  • sharon04040
    sharon04040 alison44235

    Posted

    Hi alison

    hope youre feeling better today, the strangest thing I believe is once you have minor accidents etc the illness becomes worse...I recently fell off my bottom stair at home om 27/03/15 , I went to hospital on the evening but was kept in put on fluids and given other fluids for adrenal insufficiency. I also CFS and one of the hardest thingscin everyday life is other people dont fully understand the severity off your illness and how you actually feel. Take care hun x

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