Fighting a losing battle??

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Fighting a losing battle??

Postby Soph_ness » Mon Oct 21, 2013 12:34 am

Hi everyone,

Me and my partner feel as if we're fighting a losing battle at the moment.
She has been suffering with all the fibro systems since childhood, has seen a large number of various gps, hospitals, physios etc over the years and had endless amounts of blood tests etc, but as soon as we get close to an answer it goes back to square one.

Over the last 6months she has deteriorated rapidly; there are days that she's paralysed etc and after various trips to A&E with no outcome she's been forced to quit work.

She was recently seeing a bowel specialist as her stomach problems were getting uncontrollable - he seemed understanding and convinced all her pains were linked and knew what it was. After a colonoscopy and mri scan of her bowel, still no diagnoses. He suspected crohn's disease at first, but this isn't the case.
After speaking to a work colleague about my partner, she said that her symptoms sounded like fibromyalgia. After reading up and doing research about the condition, it was like my partner reading her life story over and over again. We did mention fibromyalgia to the specialist, but has pretty much said as he's a bowel specialist, there's no more he can do.

Due to her quitting work due to illness and myself resigning also to help care for her, we are moving across the country to be nearer to family. We're both worried we'll have to start again with another gp with no answers when its completely obvious she has fibromyalgia.

We just wondered if anybody had any advice on where to go next or what to do or any recommended doctors in the Lancashire area.

Thank you.
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Re: Fighting a losing battle??

Postby FluppyPuffy » Mon Oct 21, 2013 1:19 pm

:cow-wave: :cow-wave: and :welcome: to both of you :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave:

Sorry to hear what your partner has been going thru over the years :( :( I wish I could say it's unusual, unfortunately there are still far too many people having very similar experiences due to a lack of knowledge/awareness of conditions such as FM.

To try and find a decent GP in the area you'll be moving to, you could have a look to see if there is a Support Group. If there is, you could try contacting them to see if they have any recommendations for a decent one, or at the very least, be able to advise you which ones to avoid around where you will be. Alternatively, contact surgeries that you will be able access when you move and ask if they have any patients registered with conditions such as FM, CFS/ME. If they do, you could then ask if there is a particular GP who tends to see these patients. Hopefully then, you'll find a helpful and supportive one :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed:

Has your partner asked to be referred to a Rheumatologist or other specialist which specialises in/has an interest in such conditions??? They tend to be the ones who deal with dx'ing/confirming dx's.

Apart from seeing a different GP where you currently are, I'm not sure what else to suggest. Usually the next step would be to try and find a different surgery, but with your move to Lancashire, that could make things tricky and confuzzling as you'll need to change surgeries again.
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Re: Fighting a losing battle??

Postby denys » Mon Oct 21, 2013 1:22 pm

Sorry I cant recommend any doctors or even give an opinion as to whether your partner has FM as I'm not qualified to do so. I would say that she shouldn't have to undergo all the testing again as her records will follow her from the old GP to the new one and as its all done electronically should be quite quick.

You can ask if any of the doctors in the surgery that you choose, are FM familiar aware and whether or not they are supportive of sufferers.

:fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: you find a decent doctor and things work out for you
Denys

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Re: Fighting a losing battle??

Postby Soph_ness » Mon Oct 21, 2013 4:47 pm

Thank for you the replys.

Yeah that was my next step as we're moving next week, so I've began to contact gps in the area to find the best one to go to when we move.

Her current gp was going to refer her to a rheumatologist last month but basically said due to us moving she wouldnt have had an appointment in time so has just put her on tramadol and naproxen but unfortunately medications really dont react well with her and she suffers with severe side effects so is reluctant to take them very often and just puts up with the pain a lot of the time.

I'll also have a look into support groups in our area for further info :-)

Fingers crossed we get somewhere, just a lot of stress on top of moving, sorting out finances etc lol, knowing what we're up against regarding her health and just having a name for it would be a big weight off our shoulders.

Hopefully soon will come the day we can have a semi-normal life for people in their early 20s lol.
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Re: Fighting a losing battle??

Postby fibro-lu » Mon Oct 21, 2013 5:31 pm

wishing you all the best for your move
hopefully all will settle soon
all the best :cow-wave: Lu
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Re: Fighting a losing battle??

Postby FluppyPuffy » Mon Oct 21, 2013 6:04 pm

Soph_ness wrote:Her current gp was going to refer her to a rheumatologist last month but basically said due to us moving she wouldnt have had an appointment in time so has just put her on tramadol and naproxen but unfortunately medications really dont react well with her and she suffers with severe side effects so is reluctant to take them very often and just puts up with the pain a lot of the time.

You could get your partner to make sure that the conversation about a rheumy referral has been noted on her records so that the new GP will know just where things have got to, and what the next likely step is to be.

Depending on the GP you both end up with, some GPs are dx'ing FM and other similar conditions themselves, so it's possible a rheumy referral may not be needed. Hopefully things will start to move in a better direction once you're back up near your family :fingerscrossed: :fingerscrossed: :fingerscrossed:
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Re: Fighting a losing battle??

Postby Soph_ness » Mon Oct 21, 2013 6:16 pm

I just got off the phone to the gp our family members are registered with up north and was told that there are currently other patients with fibromyalgia registered there too and aware of the condition! Hopefully we'll move next week and it will be more straight forward :-)

Having support around us is definitely going to be a bonus right now aswell :-)

Next step.... Start filling out PIP forms and all the rest - another battle altogether lol
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Re: Fighting a losing battle??

Postby debsmith » Mon Oct 21, 2013 7:58 pm

:crazy: :crazy: :crazy: :crazy: :crazy: :crazy: :crazy: :crazy: :crazy: :scream-1: :crazy: :crazy: :crazy: Hia I'm realli sorry to hear ur going threw soooooo much sending hugs to u both awwwwww re: new GP may b ask him/her to refer ur partner to the pain clinic as well as rhumi??? I had my diagnosis at pain clinic eventualy!!!! I have had pain for years like nearly every one on this great site! I ended up in desperation writting a complaint letter about my lack of care! As had to wait almost a year between appts! The 1st consultant was a A@@!!!! So saw new 1 who. Me immidiatly did all the tests and diagnosis! Felt weird afterwards tho took a while to get head around it all like ur partner seen by so many dr,s who are quite blazay and laid back oh its ur age etc! Ahhhhh don't give up stay as strong as u can b and u have lots of people to talk to on here who will listen,advise or just understand u need a rant! We all do me too re pip got forms today ahhhhhhhhhhh!!!! Need a degree to complete! How lovely tho that ur so supportive to ur other half mine is ok ish but doesn't realli get it he tries tho glad I have my lush woofs tho and my cheeky cat, and my gorgeous grandson to put a smile on my face! Good luck to u both let us know how u get on debbie xx
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Re: Fighting a losing battle??

Postby Soph_ness » Mon Oct 21, 2013 9:59 pm

Thank you for the lovely comments, we both appreciate it and it's nice to feel that we're not alone and going crazy lol.

Yeah she's been keeping track of pretty much every doctor, consultant, A&E department etc she's seen over the years and has made complaints before as the way she's been treated is disgusting - not even really to do with no answers but mainly due to the rudeness and judgements and comments suggesting she's a liar.

I try my best to be there for her, there's good and bad days regarding her physical health, the same as many other sufferers, but it's the mental strength more than anything that's the struggle, which is where my part plays most I guess :-)

We was going to attempt the pip forms tonight but I think enough stress for one day and we'll tackle it another day lol :-)
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Re: Fighting a losing battle??

Postby FluppyPuffy » Mon Oct 21, 2013 10:52 pm

Soph_ness wrote:We was going to attempt the pip forms tonight but I think enough stress for one day and we'll tackle it another day lol :-)

It might be worth considering tackling the PIP forms after you've got to Lancashire, one less thing to have going thru your mind while you get things ready for and actually move. I know they have to be back within a particular time frame, but talking to them and explaining about your move could well give you some additional time in which to sort them and get them sent back.
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