New here...what can I expect?

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New here...what can I expect?

Postby Sparky77 » Thu Jun 01, 2017 12:57 pm

Hey everyone, my name is Mark I'm 44 and have recently been diagnosed with FM. About 6 months ago my body started to go downhill (only way I can describe it) and steadily got worse and worse. Speaking in the present my neck/top of shoulders almost permanently ache, my legs and arms ache and feel heavy (almost like wading through mud) and I get a host of other pains (tooth and jaw ache that moves around, headaches) sleepless nights and worst of all a complete zapping of my energy. I have gone from extremely active to maybe 1 or 2 hours gardening will now completely floor me. I tried a month of amitriptyline but all it seemed to do was kill my sex drive and put on weight, I am now due to start Cymbalta and give that a go.

Well sorry that has all seemed so negative but this has completely shocked my system and I am finding it hard to adjust to this new reality. I do have a couple of questions for you good people out there though. My Dr says I am having a 'flare up'...what exactly does this mean? In terms of long-term what am I dealing with here? And lastly (and I think this is just coincidence) I have Cystic Fibrosis, is there anyone out there dealing with both conditions?

Many thanks in advance, this is all new to me so any advice and information is greatly appreciated.
Sparky77
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Re: New here...what can I expect?

Postby *Lisa* » Thu Jun 01, 2017 4:04 pm

Sparky77 wrote:
My Dr says I am having a 'flare up'...what exactly does this mean? In terms of long-term what am I dealing with here?


:welcome:

Flare ups mean a period of time where your symptoms are at its worse. Im afraid fibro is life long chronic illness.

Your only on the start of your journey there is so much more out there that can help. If you look through the UK Fibromyalgia web pages this will inform you of many details on all sorts of medications therapies etc.... linky here... http://ukfibromyalgia.com/index.php

There is also lots of information around the boards and were always here for advice and support, your not alone!

I have not come accross anyone as yet with a connection of your illness, not saying there is not but i have not in my many years of modding and speaking to fibros come accross any link to both.

BTW... see your dentist, a mouthguard can be done to help symptoms of neck, headache & jaw pain due to fibro
As a Public Moderator & Admin 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...Lisa
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Re: New here...what can I expect?

Postby Sparky77 » Thu Jun 01, 2017 4:22 pm

Wow quick reply, thank you Lisa. I will check out the link and definitely see my dentist (think I'm taking way too many ibruprofen). Glad I have found an empathetic forum. :)
Sparky77
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Re: New here...what can I expect?

Postby LindyM66 » Thu Jun 01, 2017 6:57 pm

Hi Mark

I was diagnosed with FM last year. Similar situation - went from being an active person to one who couldnt even wioe her own butt - when it first hit. I didn't know what was wrong with me. Took a few months to get a diagnosis.
As Lisa stated, it is a chronic, life long condition, and the symptoms are heightened during a flare up. FM affects us all differently, but we can also share alot of symptoms. There are meds available, again, it's finding the right combination.
I find heat helps me greatly. My heat pad is my best friend lol.
Im now in the position where the neurologist thinks it could be something else other than FM. Waiting on a date for MRI.
I would say, don't push yourself to much - I tend to pay dearly when I do this. Learn when to stop and rest. When that fatigue hits, it's like someone has pulled out the plug.

It's 1 big learning curve :-)

Much Love
Lindy x
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Re: New here...what can I expect?

Postby Sparky77 » Thu Jun 01, 2017 7:11 pm

Thank you for that Lindy, you sound just like my wife (lol). After several weeks of crashing (several times I was crawling on the ground, hardly able to walk) my wife has grounded me the last two days. I find when I start a job I usually need to finish it, changing that way of thinking is going to be hard. Its funny but I can almost deal with the pain but the frustration at my body quitting on me is driving me nuts. I will definitely get a heat pad (my neck is the worst pain of all) and thank you as well for the warm welcome. :)
Sparky77
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Re: New here...what can I expect?

Postby Eian Mcneely » Sat Jun 03, 2017 7:12 pm

When i get diagnosed it a big stumble in my life in comes all at once followed by lenthy diagnosis procedures. It might be different for us all but we still have much common to share. Hope things will change positively for us all...
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Re: New here...what can I expect?

Postby tomtom » Sun Jun 04, 2017 1:25 pm

Hi all sorry to jump on this but am new here also, I don't know how to start a topic, can anyone tell me is there anywhere you can see an actual pip form that has been fully completed by anyone at all thanks in advance
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Re: New here...what can I expect?

Postby *Lisa* » Sun Jun 04, 2017 4:25 pm

tomtom wrote:Hi all sorry to jump on this but am new here also, I don't know how to start a topic, can anyone tell me is there anywhere you can see an actual pip form that has been fully completed by anyone at all thanks in advance



Hi,

Go to the board index the select a category for example *Living with fibromyalgia* and press on the NEW TOPIC tab.

There is no PIP completed form anywhere that I know of over Internet.

Have a browse on our benefits and work board for help and information on PIP forms.
As a Public Moderator & Admin 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...Lisa
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