Newly diagnosed

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Newly diagnosed

Postby scottydog » Tue Sep 23, 2014 12:21 pm

Hi all

I have been unwell for a number of years and today have been diagnosed with Fibromyalgia by a Rheumatologist. Previously it was thought I had CFS which, it seems, not to be the case.

It seems there are similarities between CFS and FMS and coping techniques are the same. I am used to working and wonder if anyone has been able to return to work once/if this condition is under control? I asked the consultant about work and he said I couldn't look at that now?

I have had shoulder ops and have nerve impingement in my neck and I think this may have delayed my diagnosis as the drs weren't looking at my overall health just my neck and shoulder issues.

Can I also ask if the meds I am on are helpful to Fibromyalgia. I am concerned about withdrawals as I have been on them for over a year. They are Amitriptyline 50mg, Co codamol 30mg and Butrans patches 20 micg.

Many thanks!
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Re: Newly diagnosed

Postby dazzleship » Tue Sep 23, 2014 12:49 pm

hi scottydog welcome to the forum

obviously I can't answer for everyone but in my case I haven't had to stop working yet (although there are days when I can't make it into the office). I've had fibro for just over 2 years. I think there are some others on here who still work also.

I guess it's all down to individual circumstance as fibro affects us all differently. it would, I imagine, also depend on the type of work you do as to whether its possible to carry on / return to it.

as for the meds I'll let someone else answer that :-) I have bad reactions to most meds and the only one in your list that I can take is co-codamol, which takes the edge of the pain for me. couldn't tell you what dosage though. I just take one tablet if pain is too bad (I am allowed to take two at a time but if I did that I'd be on another planet)
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Re: Newly diagnosed

Postby FluppyPuffy » Tue Sep 23, 2014 1:16 pm

:welcome: to our little sanctuary scottydog :cow-wave: :cow-wave:

There are many, many similarities between FM and CFS, so as well as there being similarities in the coping techniques that can be used as part of managing them, the same can also be applied to meds too. Your current cocktail ingredients can and are used in trying to manage FM, so hopefully those concerns about withdrawals, swapping meds etc will start to quieten down for you :fingerscrossed: :fingerscrossed: :fingerscrossed:

Whilst it is possible that the ops you have undergone, as well as the nerve impingement, may have contributed to a delay in your FM dx, it is also possible that it may have had no effect on how long things took either. FM is a pretty sneaky condition, and will crawl in thru the smallest gap possible, mingling its many symptoms in with the effects of other health issues you may experience. It can also mimic other conditions too, which often adds to delays in getting those answers as to what is happening with your body.

It is possible to work with something like FM. Just as to how long, and the type of work that can be done, all comes down to how you are affected, how effective you find meds that you take, what your own limits and capabilities are, as well as having an understanding employer who is prepared to bring in "reasonable adjustments" for you to carry on in your role with your problems taken into consideration. There are quite a good number on here who still work, some full~time, others part~time, either in their original roles or have changed jobs to try and make things a little more manageable for themselves. If you have a bit of a looky around the boards, try using the search function, as well as asking questions about this, you might come across some helpful ideas/suggestions that could help you start taking a step or 2 towards considering such an option at some point in the future.
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Re: Newly diagnosed

Postby Theresa34 » Tue Sep 23, 2014 1:17 pm

I was diagnosed in Feb this year by my rheumatologist. I don't go out to work but I do all the housework every day, take the kids to school and fetch them. I try and add an exercise in here and there too. I find movement greatly helps me as I get too stiff sitting still for too long. I'm not out working due to the expense of childcare. I was looking to return once they are old enough but now I'm not sure. Will cross that bridge when I come to it.

I also take Amitriptyline. Unfortunately it stopped working for me a few times, not for the pain but for the sleep side of things and I ended up going from 10mg to 50mg. The higher dose was too bad for me. I was a zombie day after day. I upped it under the GPS consent as I only see the rheumy every six months and my rheumy nurse inbetween. On review by my rheumy he put me down to 25mg and added 300mg Gabapentin. I feel so much better on the two of those and sleep soundly again. It definately helps with pain as I rarely take painkillers now. I also take vit D to keep my levels normal as I was deficient and then one med for my thyroid. So not too many :-D
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Newly diagnosed

Postby SchroedingersCat » Tue Sep 23, 2014 3:06 pm

I've never stopped working, and the only time off I have had has been related to bugs or actual injuries, not FM. So yes, some of us work.
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Re: Newly diagnosed

Postby scottydog » Tue Sep 23, 2014 4:47 pm

Hi

Thank you to all that have posted a response. I can see that everyone's experience of the condition differs.

I would say (hope) that I am probably at my worst just being diagnosed and once I have seem my GP, reviewed my meds and a treatment/coping plan is in place I will be able to start to improve then I can think about work. I am/was an Office Manager with the Civil Service and they are trying to dismiss me on I'll health grounds. I have been trying to fight this decision but, after diagnosis, I guess my job will be a thing of the past. I will concentrate on getting better and look for part time work at a lower grade which should help with stress levels.

Thanks again
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Re: Newly diagnosed

Postby madchickenlady » Sun Sep 28, 2014 10:44 pm

I was diagnosed 11 years ago and have been working as a nursing auxiliary all that time, I have had varying amounts of time off because of Fibro but up until now never longer than a few days at a time, regarding your job you are covered under the Disability act so your employers have to make reasonable adjustments at work to enable you to carry on working there, the stress of your job could make your symptoms worse though so its a case of weighing up the pros and cons on whether you should stay or change jobs :-)
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