undiagnosed and confused....

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undiagnosed and confused....

Postby Charlie28 » Mon Sep 13, 2010 1:29 pm

I first (and last!) contacted the website in October last year when I had been doing some research into painful/restless legs and wondering what was wrong with me. I visited my doctor convinced I had very many symptoms of fibromyalgia only for him to sigh rather loudly and tell me he couldn't deal with my great list of illnesses and should "we" try one at a time? Anyway, suffice to say I didn't take it any further with the NHS and I am still undiagnosed.

This year I was diagnosed with a degenerative disc condition of the spine (which is ongoing, physio, scans etc) and my partner (and I, partly) are putting my leg pain down to a possible problem with my lumbar region (to be scanned this Wednesday).

The weather has turned now, just this last week to two weeks, to cold and wet and I ache ALL over. My arms are tired, my legs are burning and hurt a lot, as do my hips ankles and knees. I'm lethargic, falling asleep in the daytime AGAIN just like last autumn/winter... It's a repeat of this time last year, but am I just being a hypochondriac?!!! I'm scared to go back to my doctor as I am in and out and in and out of my surgery for various things and its just embarrassing.

If anyone can help with advice, I'd be grateful. I cant speak to anyone about it as I'm just so embarrassed and confused.

Charlie :(
Last edited by Charlie28 on Mon Sep 13, 2010 1:58 pm, edited 1 time in total.
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Re: undiagnosed and confused....

Postby Ellen Tracey » Mon Sep 13, 2010 1:42 pm

Hi Charlie,

I would ask to see another doctor maybe?, some are more understanding than others, I hope you get some answers soon :hugs:
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Re: undiagnosed and confused....

Postby denys » Mon Sep 13, 2010 2:07 pm

Hi Charlie, why be embarrased whether you have FM or not, you obviously have something wrong with you and something needs to be done. As Ellen Tracy suggested I would see if there was another GP in the surgery that you could see, or try to find a fibro friendly one in your area and register with them. Good luck hope they sort something soon :hugs: :hugs: :wave:
Denys

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Re: undiagnosed and confused....

Postby Charlie28 » Mon Sep 13, 2010 2:18 pm

I think I feel so embarrassed because I'm at the doctors so frequently :oops: ... and it is frequent, average once a month for the past two years! I feel like people are judging me, I know I shouldn't be bothered by this, but sadly I think I am... one doctor assured me that if my lumbar region discs were in a bad condition that this could be the cause of my burning legs; even to the extent of waking me in the night.
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Re: undiagnosed and confused....

Postby shazq » Mon Sep 13, 2010 2:32 pm

Hi
You must keep going back to your GP as you need answers to your pain.
Has your GP refered you to see a rheumy or Neuro docs? If not ask to be seen as they are the ones that normally DX fibro.

Good luck. :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: undiagnosed and confused....

Postby tonydin » Fri Sep 17, 2010 6:16 pm

i know how you feel i have been treated for hyoercondria . the fear improved , but the pain got worese was sure my doc was fed up with me but as i started to see him in a less panicky condition and apreed more lucid , he completley changed and his last words while we are waiting for rummy to confirm fibro diognosis was the main reason you get anxious is becasue of the amount of pain and dicomfort you are in . that was some turn round . if fibro is confirmed then i think he will be very suppotive over if
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Re: undiagnosed and confused....

Postby LinzWorld » Wed Sep 22, 2010 8:03 am

I would make a list of your symptoms, putting those that cause you most problems at the top and highlighting those that could not be due to your current diagnosis. Then make a double appointment with a GP (preferably a different one to the GP that said you could only do one symptom per appointment), explain that you have ongoing symptoms that aren't being addressed and ask for blood tests to be done before getting a referall.
I run FibroAction, a small national charity raising awareness of Fibromyalgia Syndrome. I am not a qualified healthcare professional. If you would like medical references for any facts quoted, just PM me.
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Re: undiagnosed and confused....

Postby FlyNic » Fri Sep 24, 2010 12:13 am

Hi Charlie, :wave:

I just wanted to say I know exactly how you feel, I'm in the same boat. :hugs:
Like you, I have seen my GP about once or twice a month for the past 5 years and all ailments are put aside as - try to loose weight, you have depression, here have some pills to treat your hormonal issues, you have this-that-and-the-other...
I have changed GPs within the health centre and refuse to see the one who told me to go on Lighter Life as she didn't believe in the fad diets like Slimming World and Weight Watchers that I'd been on!!
This GP LighterLife Stupid really made me feel like a hypochondriac as well, I thought she'd written it in big bold red letters over my medical file and that previous GPs had also done this and forewarned her - is there a hint of paranoia/anxiety here?
The one I've been seeing since January does take my problems seriously, so I request to see her every time, I know when she's in and wait until those days to see her, so far she has also treated every issue one-by-one, so we've not got far until recently...

Last week, well, it'll be 2 weeks on Monday, I finally bit the bullit. I went in with my list of symptoms and said:
'I've got pain in my lower and upper back, neck, shoulders, legs and feet, I get major migraines and mood swings, I cannot sleep for the pain, I wake up tired and in pain, meet feet swell up (fluid retention) at the slightest increase of wlaking activity or heat, my knees ache... bla-de-bla-de-bla. Basically I cannot function properly.
I give up I do not know what's going on anymore and I am completely fed up with trying to treat each symptom one by one.
My friend has FM and she mentioned that a lot of my symptoms fit the FM bill. Please help?'

Finally she took notice, she looked at my back - no obvious sign of the usual suspects, maybe sciatica...
She did the usual hammer on knees and elbows test, no comment.
We talked about the ongoing issues that we've previously discussed, I mentioned my fall in January - I fell Ice Skating straight on my bottom and it immediately shot into my spine and I could not walk. They took me to hospital and the X-ray did not show anything, so I was sent home with painkillers and the message my back was severely bruised. This happened in The Netherlands and when I mentioned it to "GP LighterLife Stupid" she just shrugged her shoulders and sent me off - she didn't even make a note on my record about it.

Anyway - my nice GP took out an information leaflet about Fibro. She admitted to knowing little about Fibro, but she'd just printed out this info from the internet for another patient. She read through the leaflet and started prodding some of the pressure points, most of them hurt like mad - but those were all on the areas where I was already in pain, so I said, well, no surprise that hurts...?
She only touched one area that didn't hurt, my elbows, but then I have no pains there (yet).
She didn't do the points on my front or legs, so she didn't test all 18, but then again, she probably didn't know what she was doing anyway.

Result: I am now taking Diclofenac and Amitrityline, with review on Monday - it hasn't helped, but she did say, if these do not take away your pain in a week, we may be looking at further investigation into FM as the info sheet said that FM typically doesn't respond well to painkillers. She also referred me to Physio Dept, only because Musco-Skeletal Dept would send me straight back with a note 'Try Physio first' so she wanted to cover that. She also gave me names of private physios in case the NHS came back with a long waiting list, she referred me to the Physio Dept least likely to have a long waiting list, just in case...
From the Physio Dept I got a letter today and it said their waiting list is 15 weeks long... yes, FIFTEEN WEEKS!!! :banghead:

So although I am no further than 2 weeks ago, there is some progress in that my GP is finally looking into my symptoms as a whole and not just single items. I think a lot of GPs are not familiar with FM and maybe even scared to deal with it.
I have written to my local support group to ask if they know of a GP or specialist in the area who is good at diagnosing FM and once I have (a) name(s) I can then either go to my GP and ask to be referred or go and get a second opinion.

So my tip to you - take the bull by the horn and tell your GP exactly how you feel and/or ditch the not helpful GP and switch to another.
It's your body, your choice!

HTH somehow...
:grouphug:
Nic x
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Re: undiagnosed and confused....

Postby shazq » Fri Sep 24, 2010 10:42 am

:welcome: to the forum Nic. :wave:
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