Medication & supplements
Posted , 8 users are following.
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.
Thanks in advance,
Ellie
0 likes, 14 replies
jcnps ellie77378
Posted
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
ellie77378 jcnps
Posted
jcnps ellie77378
Posted
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
Beverley_01 ellie77378
Posted
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
ellie77378 Beverley_01
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Beverley_01 ellie77378
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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! )
B
caitlin39841 ellie77378
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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
ellie77378 caitlin39841
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caitlin39841 ellie77378
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all good luck with getting help & support
C
Beverley_01 caitlin39841
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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
pixie22 ellie77378
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ellie77378 pixie22
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jackie00198 ellie77378
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lynbolton ellie77378
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