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CFS/ME

Posted , 16 users are following.

pauladam1969
pauladam1969

Hi everybody,its my first time on these types of forums ive never been on one before.so hear goes

im a 45 year old man and ive been diagnosed with cfs/me late last year after having this disability since 2008,i used to be very active had a responsible job as a manager in retail,now 7 years later im starting to slowly except that my disability is not going to dissapear and i have to except that.its been a long and rough 7 years,my marriage broke up,i now live by myself in rural cornwall and dont really mingle with people outside since my disability,i get very anxious,i was never like these,i know i need to build up my self esteem but its so hard.

i have pains from my hips to my toes,the only way i can explain it is like running constantly and the pain you get in your legs (i remember doing cross country at school many moons ago)and thats the type of pain im in,there sore,painful,i use a rollator to get out,which took some getting used to as at first i thought everybody is looking at me,but if i wanted to go out i needed to use it.

since living by myself i do shopping in my town,my daughter helps me which is great.

ive not come on this forum to moan just to listen to other people who are in the same boat as me.

be great to hear from someone.

1 like, 53 replies

53 Replies

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  • andrew22534
    andrew22534 pauladam1969

    Posted

    Hi Paul, welcome and well done, brave move... i am in that boat along with some heart issues... well done on using tools to help you get out. I would suggest the more you can do comfortably the better, but dont over do it. pacing and planning first, believe in yourself and good luck. On here you will find many who have learnt how to cope and loads of advice, the trick is asking the right questions.
    • Bubbles61
      Bubbles61 andrew22534

      Posted

      Hi im 54 & have had m e for 14 years, & like you was the most active person around,running pubs nhtclubs buyin n selling houses n cars bringing up my 3 boys and living n loving life to the full and more.& then wham M E.. Like most you keep going n thinkin ur just tired n run down, but it just beats you in thee end, so its has to he about what you can do not what you can't, as sad n frustrating as it is, at least we are alive, so many people are worse off, so we have to keep telling ourselve that & keep a positive mental attitude, pace yourself everyday, rest when you have to, find what foods etc affect you badly the most,go walking & take in the fresh air as much as your body will allow everday, be organised & put & keep things that you need day to day close to you, dont get stressed,,!!! stress really makes it alot worse,!!! You have to fine aroutine thats best for you as we all suffer many a same symptom but not the same remidies work, its down to the individuals to find whats works best for them, i wish you all the best budy...
    • andrew22534
      andrew22534 Bubbles61

      Posted

      Thank you, indeed the routine has been the hardest to achieve, but now i am getting there it allows room for growth - at least so i plan. Good luck to you too! stress is what brought me out of remission and back into the pain of ME... had it subdued for three years... well done you though sounds like you are achieving that bit more...

       

  • pauladam1969
    pauladam1969

    Posted

    I've just started using a Tens Machine as I have also got lower back pain,I've tried different settings (acupuncture and massaging) on my back.I have put the pads on in the positions that hurt but if anything it seems to b getting worse

    It has 5,10 and 15 minute intervals and the strong signal goes upto 15,I can just manage 2/3 .does anybody have any tips?

    • lilysw
      lilysw pauladam1969

      Posted

      I would say STOP, you are actually overworking you muscles which is not the thing to do with ME...  Your poor muscles are already working overtime.   Pain is one of the biggest difficulties with ME, I have found that although I cannot stop the pain, I can ease it with relaxation techniques.  Again I know it sounds crazy but it does work better than over stimulating your muscles when you sh uld be learning to relax them.  Hope that helped....
    • pauladam1969
      pauladam1969 lilysw

      Posted

      Thanks for the advice,its just my consultant I saw for pain management said to try it and see how I go.
    • GeorgiaS
      GeorgiaS pauladam1969

      Posted

      I had a tens device and though it helped temporarily I was worried about zapping electricity into myself. It broke and I haven't replaced it. I rely on herbs now, supplements and good diet.

      I take painkillers but I keep them down to a minimum. I'm like you in being in a rural area on my own but I have friends to phone who lift me up. Their support is really helpful. And seeing the funny side of life! razz

    • pauladam1969
      pauladam1969 GeorgiaS

      Posted

      Thanks Georgia for the advice.I think your right about the Tens Machine as someone else said not to use it as it can do more harm than good 😊
    • GeorgiaS
      GeorgiaS pauladam1969

      Posted

      I can't honestly say that it did harm but  I wasn't willing to risk it, especially with my body being so weak and poorly. razz
    • dragontest
      dragontest GeorgiaS

      Posted

      Hi Georgia

      I think your right...

      The specialist I saw at the local hospital a few yeras ago, basically advised me not use a tens machine, as he has not seen any results that were encouraging in other patients with ME so I never bothered…

      Like you I just take painkillers and sleeping pills but only as a last resort.

      Keeping a level of “exercise” is very difficult with ME due to the extreme fatigue etc, but struggling to maintain some degree of exercise is worth the pain I think, it’s a case of use it or lose it when it comes to your mobility or so I have found over the past 20 years.

    • GeorgiaS
      GeorgiaS dragontest

      Posted

      I'm virtually bed ridden but I play music and move my legs and arms so that's excercise! And it make me happy. razz
    • georgeGG
      georgeGG GeorgiaS

      Posted

      Sounds like dancing in bed. That is a lovely way to get some exercise.
    • bronwyn97278
      bronwyn97278 pauladam1969

      Posted

      Hi Paul;   yes I thought of using a TENS too, but feel it would ovework the muscles...it is helpful for increasing blood supply, which is helpful in carrying oxygen to the muscles, which does help the muscles get their oxygen...but it is like exercising the muscles, and this causes more exhaustion for them...as I have said to some others, I have found that ENDEP taken daily, with magnesium, helps the msucle pain.  I find my best exerciase is waliking in the Fresh Air, as for some reason, it is better, and less exhausting than other exercise.  Another causer of muscle pain/exhaustion is air-conditioning...my muscles SCREAM in pain, if I subject myself to it....and any extreme heat..as we had here in Qld, Australia, in November...I had to increase my daily intake of Endep to stop the pain...I also like to research, as this helps me to keep my mind active, and forums like this one, keep me in contact with people who understand me and my body, for though others are sympathetic, they don't Really understand the frustration.  keep in touch.   Bron
  • lilysw
    lilysw pauladam1969

    Posted

    Hi Paul, welcome and well done for reaching out, it's very hard to do anything with this dreadful disease.  I just wondered if you knew that there is a number of helpful organisations for ME..  There is also a great ORG. called Outlook, you can self refer, in Cornwall who you can make an appointment with and chat too?  There is also brilliant ME/CFS support at Treliske Hosp, where a Dr Thacker is in charge and they have OT's that will come out an help and advise and try to help you achieve your optimum within this illness.  You need a referral from your GP.  I have had ME for 23yrs, I am mostly housebound, I can manage the occasional outing, usually to the DR's ..  But spend most of my time here at home also in rural Cornwall.  I struggle everyday with ME, and I am currently in a downward phase. not fun at all.   I have found the assistance of the Treliske ME clinic has been really positive for me, after 22 years of battling alone, just being told that this is it deal with it.  

    I would say on the positive side that there are lots of tips that can help you.  remaining positive it the most crucial, CBT and self help cd's are really good.  I know it sounds trite when you consider the magitude of the illness but every little thing you can do to help yourself will benefit you.   Talking books from you Lbrary are very good for when you can't cope with sensory overload, if you contact your GP he can fill in a form that will let you access them for free...  

    I have learned masses of coping strategies down the years far too many to explain with my very limited energy today.  I would just say, that acceptance is the 1st step to a better life, I fought it for 20+ years and did myself no end of harm.  And then you can focus on making your daily life as good as you can...  Good luck.\Lily

    • pauladam1969
      pauladam1969 lilysw

      Posted

      Thank you lily

      I know what u mean,I to get peed off going from post to post

      Thanks for the advice

    • andrew22534
      andrew22534 lilysw

      Posted

      Thank you Lily, my GP wasnt too encouraging about Trelisk on this but i will be asking for referral now. I found OutlookSW a great help in accepting where i am in life and being able to be me again.
    • lilysw
      lilysw andrew22534

      Posted

      You won't regret it, they have really helped me.  I didn't really have great expectations but it has been much better than I could have hoped for.  Dr Thacker, once you have seen her, will suggest the best meds. support etc for you to your GP....  And you can always go back again if you have new symptoms or the illness deteriorates.... GP'd aren't equiped to deal with an illness that is so open ended with SO many symptoms and they can't just write a pprescription for you.  It's worth using every avenue to help youself...  Good luck...
    • lilysw
      lilysw

      Posted

      sorry meant to say I am glad that OUTLOOKSW was able to help you....
    • guy72767
      guy72767 lilysw

      Posted

      Hi Lily...great article you put together for everyone to share....Hi paul...Hi Andrew.....where do you all live? I live in south east Cornwall....
    • lilysw
      lilysw guy72767

      Posted

      Thank you for the nice words, I find it all so exhausting :-)  I live near Lanteglos in Nth Cornwall..... Lovely surroundings, thanks goodness... Could be worse I cold be feeliing like this and live in the inner city!! Always happy to help.... Lily
    • guy72767
      guy72767 pauladam1969

      Posted

      Love the North Cornish coastline....hope to up for a visit there one day..
    • GeorgiaS
      GeorgiaS guy72767

      Posted

      I lived in Penzance and Camborne when I was young Guy, lovely part of the country! I'm in Devon now. 
    • GeorgiaS
      GeorgiaS lilysw

      Posted

      Good advice Lily, my doc works with me rather than telling me what to do.
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