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CAN SOMEONE HELP AT ALL? CHRONIC FATIGUE SYNDOME / CFS

Posted , 13 users are following.

reddevil1968
reddevil1968

Dear All ,

To all those genuine sufferers out there, I say your not alone, and never feel that your alone, but my question today has a different edge to it.

It's about others who those close to them into believing that they actually have CFS when indeed it is my belief there is nothing wrong at all, I know it's an awful condition to have, and to think that someone would actually want, to have this condition for no reason just shocks me.

My question to those others out there with CFS is simple.

What are your physical limitations day by day?, would be interested to know how it affects your

mobility in getting around, and what level of pain you get from CFS?,

I know this can all vary from Patient to to Patient but at the end of the day the symptons should

all be the dame, just different levels of intensity.

My point is with your CFS,

but could you ride a bicycle over long distances, or run for a long period of time?

could you participate in any form of extreme sports whatsoever?

you have to bear in mind the person Im referring to above does all the above, and then declares

himself to have CFS.

COULD YOU DO ANY OF THE ABOVE WITH YOUR CFS?

I would just love to know your thoughts on what you think, tell me how your CFS

effects you, im just sick and tired of hearing about this friend with CFS and how

they feel every day, and then the next breath doing all these activities.

Would someone be kind enough to ease my mind, or confirm my fear about my friend

and that he indeed trying to lie to everyone.

0 likes, 26 replies

26 Replies

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  • Samantha_Ann
    Samantha_Ann

    Posted

    I suffer with ME and got to a point where I wouldn't just get payback for an active day, I would literally be exhausted within 10 minutes of waking up and ended up in a wheelchair for a long time. I agree that it's definitely a neurological condition and not something that a psychiatrist can help with as MS runs through my family and my symptoms and those of my mum with MS are very similar and also are treated with similar medications. My mum's MS is progressive and until recently she was deteriorating and, as I mentioned earlier, I was in a wheelchair but we've both changed our eating plans completely and have managed to both improve enough that we made Christmas dinner together this year and I very rarely see any symptoms of the ME as long as I dont slip back into old habits. Once I recognised that 80 percent of the meals I was choosing to eat weren't actually food and did something about it I have unclogged all of my organs and feel like I've been reborn. I cant tell you what it feels like to come out of the dark hole that is CFS/ME but I know I'll continue doing everything in my power to stay feeling as I am now The life of me and my children has proved massively and I'm glad I've found the way out of the hole while I'm only 29 and can still enjoy some of my life, ME hasn't stolen all of my good years. I feel like I've regained the respect of my husband and when you come out of the shadow of this illness and your confidence comes back you realise just how low it makes you sink. I wish the best to anyone who is still struggling and suffering but take heart in the fact that there is a way out, or at least I found one.
    • alison44235
      alison44235 Samantha_Ann

      Posted

      I'm exhausted when i wake up. I walk.

      M.E.. and M.S. are different.

      I have had M.E. for 31 nearly 32 years am sick of it and completely sick of peoples misunderstanding of the condition. I mean people who are friends and family, sorry to keep going on about it. We were at friends last night 9 of us. 4 days ago I fell and hurt my shoulder badly, did not even get sympathy for that, so many others so much worse off than me (if only they new). I had jokingly said to my husband if I broke a leg they could understand that, but no (I did not do it on purpsoe) it is very painful and very very draining and sit at a table for 4 hours with bright lights last nigth was absolute torture. It has made my pain in shoulder worse as well. It will take at least a week just to get over last night.

      What is this diet you are on I am interested. I have a very restricted diet. The fodmap diet and I don't eat meat and am allergic to gluten and occasionalyy dairy products.

      This only helps with my I.B.S.

      Hope this makes sense I am so exhausted.

      Alison

  • Avocado
    Avocado

    Posted

    I got curious about your diet - what kind of things did you leave out and what did you start eating that made you feel so much better - could you describe it in a nutshell?

    It's been illuminating to read all the descriptions above. I also feel that there is no other way than trying to keep positive, trying to look for more information and sometimes even slightly overdoing things, to keep up with the rest of the world.

  • Joerathinam
    Joerathinam

    Posted

    Avocado, I got the LDN Medicine commercial names Nodict, Revia and Natrexone QP. But these are all prescribed to addicts. If I can stop taking Venlafaxine 187.5 mg per day. I have side effect of erectile diffusion it spoils my sexual life.
  • Avocado
    Avocado

    Posted

    Please notice that those are commercial names for naltrexone, NOT for low-dose naltrexone (LDN). In large doses naltrexone is prescribed for addicts, like you say. In CFS doses that are less that 5 mg per day are used (something like 1,5 or 3 or maximum 4,5 mg per day).This is less than one tenth of the dose for normal naltrexone. If you use naltrexone in high doses, it will not help you with CFS.

    LDN as such has very little side effects. The most common side effect is sleeping problems, which usually are worst when you start using LDN. LDN does not affect your mood considerably (it is not an antidepressant), so if you think you still need an antidepressant, you should not stop taking Venlafaxine. I am not a doctor, so I don't know much else about Venlafaxine. If you suffer from CFS, LDN is supposed to alliviate your fatigue, possibly also fever and sore throat.

    The way to get LDN is from a specialized pharmacy that can prepare small dosages of LDN. I don't know where you live at the moment, but if it's UK, I'm sure there is a way to get LDN through your doctor. If you live in India, I'm not sure at all.

  • Joerathinam
    Joerathinam

    Posted

    Thanks for the detailed information about LDN. Will try to get and use the same for the CFS.
  • Avocado
    Avocado

    Posted

    I found a Dickson chemist link about ordering Low Dose Naltrexone. In the UK, this is an easy way to get LDN. They also list chronic fatigue syndrome as one of the illnesses for which LDN is used and provide detailed instructions on how to get it and what it costs. As mentioned on the web page, always start with a low doze and use it at least for two weeks. If you start with a too large a dose, you will never get the benefit of this drug.

    http://www.dicksonchemist.co.uk/LowDoseNaltrexone/Default.aspx

  • jelelly
    jelelly reddevil1968

    Posted

    Hi

    Two years ago I could do all your friend does and more.

    However after a bad ending in work after 23 years . Having stress / depression. A bad relationship. Glandular fever and then to be diagnosed with cfs and fibro . Well I am lucky to do a twenty minute walk a day. I always try but often the pain is unbearable.

    I feel your friend may have been misdiagnosed.

    June x

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