Medication & supplements

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Hi everyone smile

I was diagnosed with cfs/me in June of this year.

I'm not really getting much support from the NHS with it, so currently not taking any medication. I had a meeting with a specialist who recommended amitriptilyne (probably wrong spelling sorry!) But that's about it.

I'm thinking of visiting my GP to discuss medication as I would like to try something, could anybody let me know what medication you have/have tried so I can do some research? Any vitamins or alternative stuff would be useful too smile

Thanks in advance,

Ellie

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14 Replies

  • Posted

    Hi Ellie

    Personally stayed away from amytrip.  because of hte side effects - personal decision obviously.

    I take

    Paracetmol as and when

    Use topcial stuff - Feldene Gel or cold gel/spray as cant stand anything that warms up the muscles - makes pain worse and usually too hot already!

    Zinc and Magnesuim - either together or as separate tabs

    Flaxseed caps

    Just added in Vit D - as now post menopause

    Rest - learning how to properly rest not just change activities!!

    Relax and put the world down!

    Massge has skometimes helped but anyting organised like pilates/yoga is not for me...have seen a physio who was useful - bed excercises marvelous and swimming helps though for me its more like relaxing in hte water - certainlhy no more plowing up and down the pool!   This goes back to lerning to relax!

    Good luck and I have found reading lots and lots about ME/CFS has helped - not getting stuck in any one area of research as it is a very complex illness.  Forums help so long as not toomany negative and angry comments - just drags me down!  We all need a rant occassionally but its not a mind set to stay in!!

    Kind regards

    Julia

     

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    • Posted

      Hi Julia, thanks for your response, very helpful!

      I get very overwhelmed doing research I see a lot of conflicting information, which just gets me all confused! I'll look into zinc and magnesium, as well as vit D, I've come across some info on those and thought they would be beneficial. Cheers! smile

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    • Posted

      Glad you found it helpful.

      There is a lot of conflicting information and for me its been a question of how it relates to me and the symptoms that I have experienced and this tends to change as time goes on...hence I will often got back to  a site and re-read the info. - sometimes makes more sense other timesIi realise that it really doesn't apply to me!

      Also a little reading canoften  go a  long way - be very thought provoking - so I  have leanrt todo it in small chunks!

      Kind regards

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  • Posted

    Hi Elle,

    Ask dr to refer you to specialist cfs/me clinic if you have one in the area? Can be helpful for some people, has been for me. I don't take meds but didn't before either. I do get awful pain sometimes and take to bed and take paracetamol if I really have to. Amitriptyline and other tri cyclic anti depressants seem to work for some people with cfs/me, I've been told? Not something I want to try at present. My own nutritional way of trying to help my symptoms is that I take a multi b complex vitamin, calcium and vit d and iron and vitamin c. No caffeine, am vegetarian and aren't huge on sugar. The Main thing though, is to rest. Its often the most difficult bit.

    Hope that helps

    B

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    • Posted

      Hi beverley smile

      Thanks for your response, I'm on the waiting list for a specialist clinic, sadly the waiting time in my area is around a year! I'm just taking multi vits, paracetamol when needed and sleeping!

      I try to eat as healthily as I can but I struggle with my appetite, sometimes barely eat for a few days and all the fresh fruit I've bought goes off lol, then I'll be ravenous and just want cheese on toast! I'm trying my best!

      I didn't want to take amitriptilyne but I know a girl my age who takes it who suffers with cfs so I'm considering trying it, I'm just worried for the side effects!

      Thanks for the help smile

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    • Posted

      Hi Ellie,

      Sorry to hear you have such a long wait for the specialist : /

      Sounds like you're doing the best you can re diet, its hard with cfs/me to manage a balanced diet as like you say, often no appetite (or energy to make it in my case! )

      Resting is the biggest thing though smile

      B

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  • Posted

    Hi Ellie.  sorry to hear  you  not having  much help from the NHS. have a look at the  'Action For Me' website or get in contact with them via phone and find out where the nearest ME/CFS support group is to you.  you could also ask where the nearest ME/CFS management course to you is loacted.  ask your GP to refer u.  it's usually a 6-8 week course that  cover the management of the basic symptoms  & of course you'll meet other ppl with similar challenges. 

    re tests: 1) make sure your Thyroxine levels are  properly tested including T3 & T4. 

    2)ask GP to check your b12,  Folate, vitamin D  levels.

    3)also ask to have a Celiac test completed. 

    these are some of the basics that can be malfunctioning  when one has  ME/CFS. correcting these helps lowern the accumulative symptom load & makes the condition more manageable.

    i've tried a wide variety of nutritional and other protocols but unfortunately,  we're not allowed to put names on here. 

    C

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    • Posted

      Thank you!

      I'm on a waiting list to see a specialist, unfortunately I'll be waiting around a year. I'll mention the tests to my GP, not sure if they have already been checked, but I got my bloods done on Fri to check me for coeliac smile

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    • Posted

      Hi Ellie.  the ME/CFS courses are run by 'Physiotherapist, Occupational Therapists and usually headed up by a Clinical Psychologist. in some places (maybe all)  one can see a Doctor @ these centres, not a 'specialist' per se, but an ordinary Doctor with an interest in, or experience in dealing with ME/CFS.  i guess the 'Specialist' you're waiting to see is an Immunologist or Endocrinologist?  some of the ME/CFS clinics provide a telphone support service, but it seems to be a bit of  a 'post code lottery' service.

      all good luck with getting help & support

      C

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    • Posted

      Hi Caitlin,

      Not sure if this'll help not but, the cfs/me clinic I attend does have specialised staff who are trained to support people wih cfs/me. I asked them because I see a clinical nurse specialist and wanted to know what that meant. I think you are correct in what you say about it being a postcode lottery regarding services and the range of support offered but, there is a shift towards specialist staff In my area, I know that.

      B

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  • Posted

    i've found Evening Primrose Oil capsules beneficial. GP used to prescribe them, but then said she couldn't any more on the NHS so I buy them from chemists, or Superdrug, or supermarket. I get the High Strength capsules (1000mg) and take 2 a day, one in morning and one at night.
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    • Posted

      Ooh thank you, I'll have a look into that! Just wanting to try more supplements, especially since its coming up to winter and I get so much worse! Cheers smile
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  • Posted

    When I was first diagnosed, I took 37 mg of doxepin, which helped enormously. It got me to feeling almost normal. Then I pushed myself and relapsed, and so began the push/crash cycle.

     

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  • Posted

    Hello, there's not really any medication as such for CFS, it's very much trial and error with supplements, diet, exercise, resting when needing to etc.  I find vitamin b12 very beneficial (though my blood tests always say I'm not needing it ) another thing I swear by is getting friendly bacteria back into the gut by use of pro biotics (good quality ones from the fridge in the health store not shelf ones) the use of coconut oil and the use of bio yogurt...not actimel or activate types...these contain sugars which feed the bad bacteria and do very little use, the natural yogurt with bio cultures. I find if I kill off some of the bad bacteria in my gut I feel a lot better after a few days.  I was put on amitriptiline in the early days but didn't find it of any benefit to me personally, as it made me more sleepy.   It can be beneficial if you have fibromylaglia as it relaxes some of the stiff painful joints.   Hope my ten pence worth helps in some way good luck 
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