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The UKFibromyalgia Forums • View topic - Hello! and a few questions...



Hello! and a few questions...

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Hello! and a few questions...

Postby Profondo » Sun Jul 27, 2014 2:51 pm

Hi, My names Jon I'm from Glasgow & suffer from Alpha-1 Antitrypsin Deficiency (a hereditary disorder that originates in the liver & affects my lungs) there seems to be a connection with Alpha-1 & Fibromyalgia, I've suffered possible FM syptoms for years & as of now am still undiagnosed - I'm currently waiting for a rheumatologist appointment which should hopefully be within a couple of weeks (after a nearly 8 month wait!). My GP thinks that my symptoms fall under FM as I do (although I'm sure she is not entirely convinced & has minimal knowledge of related symptoms). I'm wondering if any members here can help with confirming that my symptoms are indeed FM as I am at my wits end.

The main constant pain is in my left back thigh it feels like I've pulled a muscle, it is a constant throbbing that seems to get worse at night, it has been there for 3 month (this time) & has now been gone for 4 days (it will come back again - wash rinse repeat).

I also get "burning" sensations in my arms (mainly my left arm, also at times my right) I also had for 3 weeks solid recently pins & needles down my left arm 24/7 that just disappeared as quickly as it arrived. I can feel great one moment then BOOM it just hits me, sore arms, numb/burning face, spongy feeling on head, difficulty concentrating (head feeling fuzzy), friends who are with me say the colour drains out of me right in front of them, two GP's said I was having panic attacks though I've never had a panic attack in my life & this happens when I'm outside or perfectly relaxed at home.

Before these big "incidents" a day or so before I get a "warning" a slight pain in arms, with this I tend to know that a big one is coming. I used to feel like this every now and then now it's every other day & each time it's more severe & afterwards I feel like I've jointly run a marathon whilst doing ten rounds with Tyson, I also get (less severe) pains in my lower back, upper neck & shoulders, tightness in my chest, excessive burping! The "incidents" with my arms can last for a few hours that ebbs and flows & then next day I'll be fine (until the next one).

Sorry for my long winded (though with no burping!) post as I wanted to try & be as descriptive as possible, I do hope some members here can shed some light on this & maybe share some knowledge, thank you in advance.
Last edited by FluppyPuffy on Sun Jul 27, 2014 3:46 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: Hello! and a few questions...

Postby Ali170 » Sun Jul 27, 2014 4:01 pm

Hi Jon, so sorry to her of your struggles.

I am curious to know if it was your GP who mentioned the link between Alpha 1 and FM ? The pain and other symptoms you describe are consistent with FM. Have you had many tests, e.g.. blood x- rays and scans? The reason I'm asking is they usually have to eliminate all sorts of conditions before thy will diagnose FM. It took 12 years for my diagnosis !!!

It's a pretty miserable condition , I've had it for 25 years!!! I used to take a whole cocktail of drugs but felt doped up all the time and to be honest didn't really help with the pain/fatigue. I won't go into too much history/detail, just to say it seems everyone's FM journey seems to be different at different times but with the same core symptoms (and lots of transient ones too !!!)

I wish you well and hope you get the answers you deserve, this forum is brilliant for asking advice, having a rant and just knowing that you're not alone.


Take care, sending gentle hugs.
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Re: Hello! and a few questions...

Postby FluppyPuffy » Sun Jul 27, 2014 4:47 pm



If your dog doesn't like someone, then you probably shouldn't either
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Re: Hello! and a few questions...

Postby carole50 » Sun Jul 27, 2014 4:53 pm

hi jon and welcome ...
I was interested to read this i also have alpha 1 deficiency but my docs have not connected it to fibro
everyone is different with fibro symptoms , i have all over pain and even at times it feels my hair hurts at the min i have the most intense itching all over body :( ..hope you get your diagnosis sorted soon
gentle hugs x
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Re: Hello! and a few questions...

Postby krysta » Sun Jul 27, 2014 7:19 pm

I'm surprised from reading comments on these sites that most people who have been diagnosed with fibro know so little about their illness, do as I did 12 years ago go on line and get as much information as u can (and there are . Can. lenty of sites)

I was diagnosed by a consultant. My GP Had never heard of fibro and I printed off the information I found and educated him fr. then he didn't dare deny fibro's existence then he sent me to the Pain clinic and now I have the right medication and I try as best I can now with my life. Fibro is tough but we are tougher.

Good luck to everyone in finding your comfort zone fibro is now with u for life there is no cure. I recently went abroad on holiday for 2 weeks. I had one bad fibro day .. Learn how to control ur symptoms and carry on best u can. Xx
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Re: Hello! and a few questions...

Postby denys » Sun Jul 27, 2014 7:54 pm

Hi Jon and :welcome: to the site hope you get some answers soon :-D :-D :-D :-D Krysta the problem is everyone is different and so its not a one size fits all condition, you also have to sort the wheat from the chaff when searching the internet and there are probably too many sites about fibro, not all of them either accurate or helpful

Glad you have now found a balance between fibro and your everyday life and hope you manage to continue controlling things for a very long time :-D :-D
Denys

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: Hello! and a few questions...

Postby Lindenp » Mon Jul 28, 2014 2:52 pm

Hi Jon, :welcome:

I too have never heard of the Alpha-1 Antitrypsin Deficiency. I do get what I can only describe as panic attacks. Most often when I'm in bed. It's like a tight knot of fear happens in my stomach :crazy: with a feeling that I can't stay in the same position (I suppose the flight reaction). :dogrun1:

I then have a huge hot flush that seems to radiate out from the stomach to the rest of my body. :oops: I can feel it moving along my arms and legs. They vary in length, heat and frequency. Some times they only last a few minutes and as soon as it reaches the hottest point it almost immediately starts to cool down. Other times the very hot phase can last 5, 10 or 15 minutes. They vary in frequency from one a day to one every 30 mins or even less. I have linked them to being overtired but I'm not certain about it. When I have them during the night I wake up a second or two before they start! :-o I have other hot sweats too which don't have the 'fear' element with them.

They are particularly bad around 4pm to 5pm every day. I am usually in bed sleeping at that time and the hot flushes just keep coming and coming. I usually have to give up trying to sleep and have to get up. Very often the bed has great big wet patches where I've been lying. They continue for about half an hour to almost an hour whether I am in bed or not. It's got that I can just about tell the time by them. :roll:

I was having a type of hot flush when I saw the Rheumy and got diagnosed but the 'fear' ones have only been going for a few years now. I have to keep a towel beside the bed so that I can wipe myself down a bit. :yikes:

Hope you get your appointment through soon.
Gentle hugs
Linden
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Re: Hello! and a few questions...

Postby FluppyPuffy » Mon Jul 28, 2014 3:28 pm



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