Hi, my name is Bobbie and I have had M. E. and secondary fibromyalgia for 20 yrs. In full time work and one day could not get out of bed. Have had 3 week stay at National M. E. Centre in Romford, numerous CBT, and counselling. Health and activity levels have improved but still sleeping 3+ hrs after shopping etc. Stress also makes symptoms worse. Have learnt to manage it the best I can. On lots of medication.

6 Replies

  • Hi. Welcome. I also know of the hospital in Romford. Have had lots of out patient input from there for a number of years.

    Are you working now?

    What meds do you take? Be interested in any meds for M.E.

  • Hi Bevvy, thanks for your reply. The only medication I am on for my M.E. Is Baclofen for pain relief. Other meds for depression/mood stabiliser. I have been told that I am unlikely to work again. I still need days where I sleep through and frequent rest periods each day. Also the stress of getting to work at a set time or working on more than one 'shift' a week would make my M.E. worse. I guess I am still restricted by my M.E. but I am quite happy leading a quiet life.

  • Hello.

  • Hi Kitten-kat23, a belated hello as I have slept all day today.

  • Hi and welcome LottiesWeb, (or do you prefer Bobbie?). I too have a lot of pain and I find on days the pain is not controlled properly I tend to be much more tired then after getting pain drugs I liven up again, (although not enough!). Is your pain levels tolerable?

    The anti-depressants/mood stabilisers can also exacerbate drowsiness especially the likes of Zispin and Trazadone.

    Low Vit D levels can bring about low mood agitation and tiredness. I was told by a specialist in ME that people with ME are more susceptible to low levels than ordinary folk so it might be worth using a supplement.

    Hope that is of some benefit, take care.

  • Hello raffs, thank you for your comments.

    My pain levels are sort of controlled and at acceptable levels. It depends what I do as you are no doubt aware. I can take up to 3 Baclofen a day and paracetamol if needed. If my pain is intolerable I have diazepam - I only take these very very sparingly (one a day for max 3 days). My GP prescribes them because she is happy with how I manage them. They relax my muscles totally bringing much needed relief.

    I will look into Vit D raffs supplements. My eyes do not tolerate bright sunlight so I tend to avoid this (give me winter anytime). Talking about light I find the lights in shops etc have the same effect. At home I use a lamp behind me as I cannot bare to have a light source in my field of vision.

    Thanks again

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