Pain: Hi I was diagnosed with Chronic Fatigue last... - EDMESH

EDMESH

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Pain

Waterlilly profile image
8 Replies

Hi

I was diagnosed with Chronic Fatigue last June. I have only seen my G.P. and an arthritis consultant although my G.P. thinks I may also have fibromyalgia. I haven't been fully diagnosed with it. I haven't had any test for my nerves etc and I am at a point of wondering whether I have anything else wrong with me. I have pain in various parts of my body. It used to just be bone pain in my arms. Now I get random pain throughout my whole body. It's like a sharp stabbing pain which comes and goes but moves through my body. I struggle with co-coordinating my hands properly sometimes and I have little strength in my hands in comparison to how I used to be. I muddle my words up frequently and struggle sometimes to get a sentence out properly. I constantly forget what I'm saying and forget what I'm doing. Anyone have any idea if this is Chronic Fatigue or something else?

Your help with fellow sufferers would be appreciated as I am struggling with lack of support at work (I'm a nurse, in a caring proffesion, NOT!!) and with life in general. I am still managing to work full time but I'm also being made to do on call still and it is a real struggle.

Many Thanks in advance

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Waterlilly profile image
Waterlilly
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8 Replies
Bevvy profile image
Bevvy

Welcome

Do you belong to a union? Surely as a nurse you will do? They can support you with regards reasonable adjustments at work. Would have thought at least being on call could be altered?

I work part time (have ME and other issues) but certainly couldn't entertain he idea of working full time. It sounds like (from your description) that a period of part time work might help you at this time. Even if you later return to full time work.

Hope you can sort something for yourself.

Waterlilly profile image
Waterlilly in reply toBevvy

I'm going to contact the RCN next week. I don't think my manager is supporting me or understands my condition. They wouldn't let me have a phased return last September after a month off unless I took it as annual leave but I need my annual leave to recover from my time at work. I'm also having to work on call!! I won't bore you with the details but I definitely need to speak to the union. Thank you

Bevvy profile image
Bevvy in reply toWaterlilly

Yes sounds very much like union support is needed.

They clearly don't 'get it'. If you have to go sick again though I would suggest prior to your return to work you get a 'fit note' from GP recommending phases return.

Hope you get some joy from your Union.

ME65 profile image
ME65

Hi Waterlily

See if there is an ME/CFS clinic that your GP could refer you to. They will be able to back up your diagnosis and give you some support with work related problems.

I suspect the extra pain you are experiencing is due to being pushed beyond your limits. Your manager is being most unhelpful but has to adjust your hours to help you remain in work whether he/she likes it or not!! Hope the union can support you in this.

Good luck.

Waterlilly profile image
Waterlilly in reply toME65

Thank you for your reply. Unfortunately Occ Health have said that the disability act has changed and I don't have any dispensation. My matron and manager have said that I have to carry on because they also have to think about the rest of the team. I was referred to the M.E. service after I managed to find out there was one, which my Dr knew nothing about and was supposed to be attending a seminar tomorrow. However, due to lack of NHS funding it has been cancelled :(

ME65 profile image
ME65 in reply toWaterlilly

Sounds to me like Occ Health were trying to fob you off. The only change to the Disability Discrimination Act is the name. In 2010 the DDA was incorporated into the Equality Act. But this is nit-picking - the rules have not changed and you are entitled to reasonable adjustments to enable you to continue to work. They are all in breach of this rule. Perhaps they don't think this is a long term illness and are hoping you will "get over it" ! I do hope the union can sort this out for you without having to go to a Tribunal. Do let us know what the union says. We are all rooting for you!! xx

myhealthneeds profile image
myhealthneeds

What a mess up! And you're right where it all ought to be done correctly! So what has the Disability Act changed to?? Someone I know has just had a phased return to work after being pushed to the limit because of overwork - too much work for too few people until they dropped! Then had to have weeks off after a mental and physical collapse but eventually with a phased return (just a few weeks ago). If they keep pushing you you will have to push yourself more and will then get worse and be off for a long period. M.E. needs gentle treatment, not a whip! Rest! That's what you need. You are experiencing what M.E. people experience when they are pushing themselves.

ALKT profile image
ALKT

you could check your symptoms out against the full list on the humming bird foundation for m e site its free and is easy to navigate the few symptoms you mentioned are similar to fibro myalgia as well as m.e . both are horrendous i certainly hope you do not have both because that is also a possibility.best wishes.

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