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The UKFibromyalgia Forums • View topic - Waiting for a diagnosis.



Waiting for a diagnosis.

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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Waiting for a diagnosis.

Postby LouiseGB » Mon Nov 11, 2013 2:57 pm

Hi, I've had blood tests last week & my doctor thinks I may have fibromyalgia, which I agree with from the symptoms I have. I've had severe leg pains for over a year, they came and went, but are now here all the time, they wake me up and keep me awake. Last week I noticed that my shoulders & arms are feeling similar, so decided to get the doctor's opinion. I also have twitches on one side of my face, irritable bowel syndrome, headaches, tiredness, nausea, mixing words up, but hadn't put all these symptoms together, I'd just thought the leg pains were one separate thing. I've since read about fibromyalgia and was shocked at how many of the symptoms I have got, but hadn't related them to the leg pains. Ibuprofen seems to ease it long enough to let me sleep, and walking helps a lot.

I have met someone online who directed me to this forum, and it's been a great help to chat to her as we're going through similar experiences. I just wondered if anyone has any advice about easing symptoms while I wait to see if I am diagnosed with FM? Are you all able to work out what has caused it? I've had a stressful 18 months, which is when it seemed to have started, but wasn't sure if that would've triggered this?

Thanks in advance. xxx
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Re: Waiting for a diagnosis.

Postby a.lyndon » Tue Nov 12, 2013 11:46 am

HI,

I have recently been diagnosed with FM but had to go privately to get a diagnosis as my GP was a waste of time. The specialist I saw only took 30 mins to diagnose me. All of your symptoms sound very familiar but one thing that I was checked for was skin sensitivity (touch sore), that's a biggy for me as well as the overwhelming fatigue. I think the change in the weather has quite a big impact on my FM as I'm not in so much pain all of the time. I do have good days (when i'm not using my stick or stuck in a coma LOL).

As far as medication goes. I'm currently taking Amytriptaline (for sleep and pain) but Dr's reluctant to give me pain killers. It does seem to be a bit of a battle to get Dr's to understand but hopefully yours are more familiar with FM.

There's lots of support and helpful hints on this forum. Great for venting any issues.

Take care
Ally :lol:
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Re: Waiting for a diagnosis.

Postby LouiseGB » Tue Nov 12, 2013 1:04 pm

Thanks Ally, I appreciate your reply, it's just been good to know that all the odd symptoms aren't in my imagination. I didn't link any of them until recently. I'm going to ring for my results, hope they'll be in tomorrow or Thursday. My doctor did say she thinks it's FM, which is half way there I guess, some of the older ones would've fobbed me off. I had an over active thyroid when I was 16, my GP told my mum I was imagining it, there was nothing wrong with me. She insisted on blood tests and was proved right, I ended up on 9 tablets a day for years! Sometimes we don't always display the text book symptoms and they can't cope, lol. Fingers crossed I get some answers and something to ease the aches and pains.

Thanks again for replying. xx
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Re: Waiting for a diagnosis.

Postby FluppyPuffy » Tue Nov 12, 2013 1:14 pm

:welcome: to our little sanctuary Louise :cow-wave: :cow-wave: :cow-wave: Wish it was nicer circumstances that had brought you to us :( :( :(

There is lots of info and advice on here, so hopefully there will be a few suggestions to help make you feel a little more comfortable while you're waiting for your full membership of the club to come thru :lol: :lol: :lol: :lol:

A lot of us find that applying heat/warmth to areas that are particularly affected can help ease things, so we often have wheaty bags that can be zapped in the mikey for such moments. A good old hottie bottie often helps with this, esp if it's a larger area than a wheaty bag can cover. Having a soak in a warm bath can have a similar effect, and adding in some nice smellies can help make things a little more relaxing. Quite a few of us also find a TENs machine can make a difference too.

Meds wise, if you find your ibuprofen isn't always enough to keep things at bay (which does happen at times when things are flaring up) a word with your local pharmacist can help as they can advise on what other things can be taken alongside or instead of them to help make things more bearable. And if otc~strength isn't enough, your GP can prescribe different things to help get things behaving more suitably.

The actual, 100% definite cause of FM isn't known yet, research is needed in that area, along with lots in other areas to get the answers to such questions. However, most of us tend to have quite a good idea of what set things off for us. For me it is thought that a broken neck from being involved in a crash with a bus was the initial trigger, followed then by aggro and pressures relating to work, an abusive relationship, and a host of other personal matters that all snowballed and finally floored me. The stressful 18 months you've had may well be a contributory element in FM potentially developing as trauma, be it physical, emotional, psychological, is considered to be a major contender in causing what we each experience.


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Re: Waiting for a diagnosis.

Postby LouiseGB » Tue Nov 12, 2013 1:41 pm

Thanks for that advice, brilliant ideas. I must admit, being warm in the shower has relieved it, and being out on the school run in the cold weather hasn't helped at all, although a walk often does ease it.

I had a rough time, starting about 20 months ago, and it was particularly bad for about 4 or 5 months, which is when I started to have leg pains, but we'd laughed about it, wondering how I'd damaged myself. Looking back, that was a really upsetting & difficult time, and it went on for a long time, I hardly recognised myself. Then it changed around and I've taken control of the situation more now, things are good, but I think that particular time was very distressing and possibly did cause my body to react. I'm usually very laid back, and I don't think I have ways to express my upset, I bottle things up and it comes out eventually, by which time I'm in a mess. I do think that's what started it. It's a bit of a shock to find that there's no end though, we just assume if we're 'ill', we can get treatment and get better, but knowing this is how things will be is quite difficult to cope with.

Yesterday wasn't too bad, but today my neck hurts & my legs are painful. I need to walk, but think I'll lay in a warm bath first before all the kids come back from school.

I'll have a look around the forum, but am very grateful for the messages. xx
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Re: Waiting for a diagnosis.

Postby lala1980 » Tue Nov 19, 2013 8:15 pm

Hi louisa ;) ive also waiting for blood test back tomoz errk my legs have been very painful and so achy I cant move when I get to bed im just getting in the bath which is my only saviour Of the day ive lots of symptoms ibs, restless legs And then I get twinges, every part of my body seem to get sharp pains just for a few seconds the list gos on so I think we are in the same place at the moment so you not on your own hunny im not sure when this all started it been coming on so gradual I did notice it but just put it down to a busy life.. ive 3 children and I feel for then I can do most thing but thats on a good day :) nice to meet u xxx
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Re: Waiting for a diagnosis.

Postby lala1980 » Tue Nov 19, 2013 8:16 pm

Sorry Louise :/ )) xx
If you smile then the world is a better place :-)
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Re: Waiting for a diagnosis.

Postby dotty lotty » Tue Nov 19, 2013 9:04 pm

For those who like heat to soothe Lidl have big electric shawls and smaller pads just now and not expensive. Sitting with it wrapped around me is lovely. :teddy-bear:
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Re: Waiting for a diagnosis.

Postby lala1980 » Tue Nov 19, 2013 11:07 pm

Oh what a great idea ive been useing a beany heat bag but I was only (last night) saying to my OH that I need a mega big one for my whole body mmm going to go get it tomoz ta dotty lotty x
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Re: Waiting for a diagnosis.

Postby denys » Wed Nov 20, 2013 11:20 pm

Hi and :welcome: to the forum :cow-wave: :cow-wave: wish it was under different circumstances
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