Just Diagnosed

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Just Diagnosed

Postby MissJax » Thu Aug 30, 2012 1:43 pm

Hi everyone,

I have just recently been diagnosed with Fibromyalgia but I still have a lot of unanswered questions / doubts and just wondering if there is anyone out there who can help or is experiencing the same sort of thing?

I approached the doctors about pains I was getting mainly in my legs but also in my arms, I was sent off to see a Physio who handed me a book on Fibromyalgia and told me to have a look and see if it rang any bells. Well it did ring a few bells, I hadn't thought that arm / leg pain could be linked to anything other than back pain so hadn't considered it but alot of the symptoms they were quoting also rang bells, like fatigue, IBS, depression, all of which I have been experiencing for the past year.

I have had several "flare ups" where I felt like I had been hit with a bus, a real head fluey feeling and insomnia and so I thought this could be it. I had also seen a physio privately but she was unable to find anything physically wrong with my back. A week after I was given the booklet I was having a flare up so went to see the doctor to see if it could actually be Fibro. I had blood tests which didnt show anything wrong, so they then arranged for me to see a Rheumatologist.

I saw him last week and he agrees that it is Fibromyalgia but I am a bit concerned that they have just jumped on this diagnosis because it is the only option they have been given. There are some symptoms I am experiencing that don't seem to fit the FM mould. I keep retching as though to be sick but I don't actually feel sick at all (this is really unusual for me as I have a stomach of steel and am never physiically sick when poorly) this has been going on for a full year now, I had seen the docs but they couldn't find a cause but I am convinced this goes hand in hand with the "FM", I have tried to place when and where it occurs but it seems to be caused by a mix between thick mucus in my throat / chnage in temperature / empty stomach. Has anyone else experienced this?

I also seem to get timy little red spots on my skin / under the skin they aren't raised, sometimes these appear when I have scratched somewhere but at the moment they seem to be everywhere on my legs.

The other reason for my post is to ask what to expect, I told the GP & the Rheumy that I was really struggling with the pain at work, I work at a desk but my legs & arms can feel on fire within 15 mins of me being in so I am taking ibruprofen / paracetamol just to get me through the day. The Rheumy is arranging for me to see an Occ Therapist but really not sure who and how to approach for any advice / medication to make me more comfy.

While I was being diagnosed I was having a flare up and couldnt sleep for 5 days and went to see the GP who gave me a small course of sleeping pills to get back to the routine. How do other FM suffers cope, do you just medicate in flare ups or have you been given something to help you day to day?

Sorry for the rambling but I am just trying to get my head around it but have found out far more online than from any GP's I have seen so far.

Thanks

Jax
Last edited by FluppyPuffy on Thu Aug 30, 2012 1:50 pm, edited 1 time in total.
Reason: Split into smaller paragraphs for easier reading.
MissJax
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Re: Just Diagnosed

Postby FluppyPuffy » Thu Aug 30, 2012 2:24 pm

:wave: :wave: Jax and :welcome: to the forum. I've moved you into here with it being your intro post, hopefully you'll get some helpful replies. I've also split your post into smaller paragraphs as quite a number of us on here struggle when it comes to reading large blocks of text.

Being told you have FM turns everything upside down and inside out, so how you're thinking and feeling at the moment is something most of us have gone thru and know how it can affect things.

When someone is given a dx of FM, it is usually after all other possibilities have been ruled out. So altho you went with with the info you had been given, the decision about your dx should have come from test results, medical history etc. If it is still bothering you about the way the dx has come about, you could go and discuss it with your GP, or if necessary ask for a second opinion.

Altho we share a range of symptoms, FM affects us all so very differently and we each have our own little "quirks" when it comes to symptoms. Altho swallowing'/retching problems aren't on the list of "official" symptoms, there have been a number of people mention it on here, so having a look and read around the boards may help you find some answers and/or settle your mind about things.

This linky has info about the kinds of meds used to try and manage FM http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx Have a look at it, then go and see your GP about what might be suitable for you to try. One of the first meds often tried is amitriptyline, an anti~depressant that has been found to help with pain and sleep at lower doses. With you mentioning the disrupted sleep, it might be one for you to ask about at first.

As for what to expect.....................not an easy one to answer I'm afraid :facepalm: :facepalm: You could find that over time things start to worsen for you symptom~wise, but then again things could stay the same for you. You could fall on the right mix of meds/treatments/approaches that mean you can carry on pretty much as normal, or you could find that you need to change things in your life over time so you can live with your FM.

Unfortunately FM doesn't play by the rules that other conditions follow, instead it makes things up as it goes along and just when we think we might have got a grip on a part of it, it turns everything on its head and we have to start all over again :swear1: :swear1: :swear1:

Don't worry about rambling on here, it's something we all do at some point, and on here we all understand what it puts you thru :grouphug: :grouphug: :grouphug: Just about anything you're wondering about, it doesn't usually take long for someone to bobble along with some advice or suggestion for you :penguin: :penguin: :penguin: :penguin:
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: Just Diagnosed

Postby FluppyPuffy » Thu Aug 30, 2012 2:31 pm

I've just removed the duplicated post you made with you having this active one. We do ask that members don't make duplicated posts as they tend to cause confusion and usually end up with the same responses on each one.
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.

If your dog doesn't like someone, then you probably shouldn't either
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Re: Just Diagnosed

Postby MissJax » Thu Aug 30, 2012 3:16 pm

Thanks FluffyPuppy, I'll have a good trawl through old messages and see what I can see. Maybe i'll have to go back to GP, I figured that they would offer me a course of medication but maybe I'll have to make an appointment to ask for it.

Thanks for your help, great to know there is somewhere I can get info from.

Apologies for the duplicate, I lost my post and thought I had deleted it!

Cheers
Jax
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Re: Just Diagnosed

Postby denys » Thu Aug 30, 2012 4:21 pm

Hi and :welcome: to the forum :wave: as Flup has already said there are loads of posts that might give you a few answers to your questions and hopefully allay a lot of your fears, if you still have a specific question dont worry just post and you'll get answers :-D :-D :-D :-D
Denys

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