Please help

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Please help

Postby jay10 » Mon Jan 23, 2012 10:27 pm

Hello everyone,
I dont suffere from fibromyalgia myself, but I think my husband might. Sorry its going to be a long story.

My husband was fit and well and never had any health problems till 4 years ago whilst on a shopping trip he started to complain of a headache and a numb leg. By the evening he had blurred vision and numbness/weakness spanning his whole left side. He was admitted to hospital CT was negative then MRI was negative as well, his spinal tap showed was normal but the weakness and numbness remained. At the time no one was able to give him any diognosis they did not know what it was.

Over the 4 years he has been to 2 different neurologists and had further MRI's of the brain which show no abnormality. No one can give any diognosis, he has been suffering with pain, burning sensation and sensation of pulling muscles, nausea and vommiting and headaches for 4 years. He never fits the symptoms for any diognosis, the only thing that does not fit for the fibromyalgia is the how his was sudden onset.

He has got to his wits end, we live on the bread line as he lost his job and refuses to claim dla as if he is not diognoised with anything technically there is nothing wrong with him!!!! How will having a diognosis help it will help him. His gp would be happy if he just went away and just put in repeats, hes on paracetamol, codeine, naproxen, tramadol and now fentanly patches.

Please any one give any advice, tests I can ask for or drugs we can try or how it started for you, please help.
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Re: Please help

Postby shelleydwales » Mon Jan 23, 2012 11:34 pm

Hi jay,
Im sorry to hear what a bad time you and hubby are going through.
Has your hubby been seen by a rheumatolagist for a tender point examination?
I can only go from my own experience,my fibro did come on gradually.
Usually tests do come back negative with fibro.
The moderators on here are the best so im sure you will get some good advice!!
Take care both
Shell xx
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Re: Please help

Postby FluppyPuffy » Mon Jan 23, 2012 11:48 pm

:welcome: to the forum jay :wave: :wave:

I'm sorry to hear what you and hour hubby have been going thru over the past few years. Sadly it's not unusual for someone to round and round the system for ages and ages trying to get a dx :facepalm: :facepalm:

Have you asked your GP if FM could be a possibility?? If not, then it might be worth having a look at the info in this linky http://www.nhs.uk/conditions/Fibromyalgia/Pages/Introduction.aspx write down how you think your hubby fits with FM and see what your GP says. No doubt he will have various tests over the years for all sorts of possibilities, that have been ruled out. If it is FM, as it doesn't show up in blood tests, xrays, scans etc, that could well explain why nothing has shown up before.

If your GP seems dismissive of FM being the cause of his problems, then it might be worth seeing a different one to see what they think about the idea/possibility. Hopefully tho, it will start things off to finding the reason for your hubby's problems.

Where DLA is concerned, it isn't claimed for a particular condition/illness, it is awarded based on how someone is affected by an illness/disability, so if he has mobility problems, he may be eligible, and the same with care problems, depending on what help he needs, he could also qualify for one of the care components. He may also be eligible for Employment and Support Allowance, which is paid to people with limited capacity for work. This linky from the main UKFM site explains more about benefits and will rpobably make a lot more sense than I can at the moment http://www.ukfibromyalgia.com/support/claiming-benefits.html If he changes his mind about seeing what he might be eligible for, if you have a Citizens Advice, Welfare Rights or other similar organisations in your area, they should be able to advise about things based on your specific situation, and may even be able to help with completing the claim forms as well.

If you have a look around the site, you may also find some useful suggestions that could be of help to your husband as the forum is full of all sorts of info and advice that we share with each other, based on what we have experienced.

Time for me to leave you in peace for a bit, anything else you want to know about, just ask away and we'll see how we can help you with it :wave: :wave: :wave:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Please help

Postby shazq » Tue Jan 24, 2012 2:22 pm

:welcome: to the forum Jay, hope your hubby gets some answers soon. :hugs:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
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Re: Please help

Postby jay10 » Tue Jan 24, 2012 4:22 pm

Many thanks for all your replies, what are your veiws on that sudden onset element.
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Re: Please help

Postby shazq » Tue Jan 24, 2012 5:41 pm

HI Jay

If your GP is not going to give your hubby any answers ask him to refer you to a Rheumy, they will be able to dx him and give your gp a list of meds to try.
It might take time to get answers as fibro does not show up in any tests so it tends to be last on the list.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Fibromyalgia Awareness Day May 12TH.
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Re: Please help

Postby FluppyPuffy » Tue Jan 24, 2012 8:52 pm

Could there have been something else that was initially causing hubby a problem, which then eased off but triggered the FM~like symptoms he has been experiencing since then :-? :-?

Most of us have developed symptoms over varying lengths of time, but with so much still not known about conditions like FM, that doesn't mean that there can't be some who experience a rapid onset of things :-? :-?
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Re: Please help

Postby jay10 » Wed Jan 25, 2012 10:00 pm

Thank you again for the replies, have made an appointment with a new gp at the surgery (he is there for 6 months) I'm going with him and am going to demand a referal to someone!!!!!
I do feel for all of you so much its horrible seeing my husband like this, one gp even went as far as saying that its just pain man up :-o .
I hope we find an answer :-)
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Re: Please help

Postby shazq » Thu Jan 26, 2012 3:54 pm

:goodluck1: keep us updated.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: Please help

Postby tazza » Fri Jan 27, 2012 6:51 pm

:wave: Hello Jay

Hope you and your hubby get some answers soon

:goodluck2: and :hugs: to you both
Tara xx


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Re: Please help

Postby PoppyFlux » Fri Jan 27, 2012 8:09 pm

Hi & :welcome:

Regarding your question on sudden onset of symptoms, I had something like this too.. I'd been suffering with intermittent pains (flare ups) over the years but didn't know anything about fibro then. Early last year my ex and I decided our 15yo son would live with him after months of my battling to get him to go to school. Within a week or so of him moving out I had a really bad flare up and since then I have rarely been pain free. My bf told me he thought I had fibro and came with me to discuss it with my GP.

My trigger was from being under immense stress for months, firstly from my marriage break-up, and then from my son's truancy. I don't know if I had fibro before this but my GP said I could have had it since my son was born as I've had symptoms since then.
Following the talk with my GP I had lots of tests to rule out other conditions, and my GP told me he needed to monitor my symptoms for 6 months before he could refer me to rheumy, which he did after the 6 months, and the rheumy dx me with fibro.

I'm glad you have an appt with a different Dr, it makes such a difference when you find one you can trust and really takes the time to listen and try to help, I hope this new Dr will do all he can to help you.
I will offer a little advice here if I may, if the new Dr does turn out to be really helpful (& locums do tend to be from my experience), then before he leaves after his 6 months ask him to recommend another Dr in the surgery that will be more sympathetic than your previous Dr.

I can only talk from my own experience, there are others that have a better understanding of this condition but I hope my words may have helped somewhat.

GL with your appt and let us know how it goes.
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