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The UKFibromyalgia Forums • View topic - Newbie and curious from Bucks



Newbie and curious from Bucks

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

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Newbie and curious from Bucks

Postby fragglerox » Thu Nov 19, 2009 9:34 pm

Hi all, glad I found this forum and all the info it contains!
I'm curious as a I saw different GP last week and he has tentatively suggested that I may have Fibro. I knew nothing about this condition until I got home that evening and went straight on the net. I was left feeling very depressed and very tearful but am gradually coming to terms with the news. Today is a good day, which is when I usually end up convincing myself that all my symptoms have gone away never to return!

Anyway, I have suffered with sometimes very bad pain in my neck and shoulders for a number of years which can lead to migraines, last year I got them about twice a month which impacted on my work and I went through the horrible experience of being sent to occupational health, thankfully it didn't go any further and I returned to work. Pain management since then with the help of my GP has been better and I can usually prevent migraines but not always.

Last week I reached the point where I finally had enough and wrote down all of my symptoms, even those I thought were not connected and handed them over to the GP. He got me to take the test for depression and anxiety (the HAD scale i think), which clearly showed I have both and wrote me prescriptions for Tramadol (100mg 4 x daily) and Citalopram. :roll: I've not started the Citalopram as I don't like popping pills! I tried the Tramadol but it made me very sick and spaced out and couldn't go into work. :crazy: I'm trying really hard not to take any more time off sick as the Personnel lady has already accused me of becoming sick again as sick pay has kicked in! :banghead:

At the moment I tend to stick to paracetomol, syndol and co-codamol if it's very bad and then I stay in bed. My flare ups usually keep me at home for 2 or 3 days and I work through the rest, stress seems to be a massive trigger and if I already have pain then exercise make it worse. The most frustrating thing is the fatigue. I am an outdoors type person and just go mad if I can't get out, so I end up pushing myself too hard and becoming exausted.

I am at a loss as to how to manage this so that I can keep my job. I just could not manage on benefits. Last year the personnel lady said to me that if I do not improve then they would have to look at whether I am capable of doing my job and she also said they are not discriminating against me as I am not registered as disabled. To put it mildly this has gnawed away at me and left me highly anxious and I am getting paranoid about any little mistake I make at work. How can I protect myself? I don't even have a firm diagnosis. I feel awful reading the posts on here as my symptoms seem mild compared to some of you. I can still work and would like to continue to do so for as long as possible, though the pain is getting worse and seems to be spreading to other parts of my body now.

Any thoughts or comments would be greatly appreciated as I really don't know what to do next.

Many thanks to you all.
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Re: Newbie and curious from Bucks

Postby gillshutt » Fri Nov 20, 2009 8:20 am

Hi and welcome to the forum (love the name by the way :D ) You need to ask for a referral to a rheumy ASAP if your gp isn't willing to dx fm himself. The sooner you get a dx the better for you work wise.

You need to find the meds, treatments that work for you. The tramadol will make you feel spaced out for a while but should wear off so take them at the weekend or when you next have a flare. Take the lowest dose you have to start with, you can always work up later when you are used to them. If you continue to get spaced or they make you ill then you maybe need to look at taking something else.

If you have nerve pain (gnawing, toothache like pains) then perhaps gabapentin or Lyrica would help.

Do you get pains in other parts of your body? FM is dxed if you have pain in all 4 quadrants of your body.

Hope you manage to get a diagnosis soon so work get off your back. Once you have one they are obliged to do all they can to help you.

Gill x x
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Re: Newbie and curious from Bucks

Postby LinzWorld » Fri Nov 20, 2009 10:11 am

Fyi, registering as disabled went out years ago - it's not even possible to do now! The DDA covers you if you have a long-term condition that significantly impacts on your ability to do your normal life.

Work on the meds - if you start at a low dose, then it'll be easier. And side effects tend to ease after a week or so with many meds. Some people I've known have started them over a holiday or long weekend to avoid taking extra sick time off work.
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Re: Newbie and curious from Bucks

Postby shazq » Fri Nov 20, 2009 2:26 pm

Hi :welcome: to the forum. :wave:
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Re: Newbie and curious from Bucks

Postby *Lisa* » Fri Nov 20, 2009 2:52 pm

Hi & :welcome:
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Re: Newbie and curious from Bucks

Postby fragglerox » Sun Nov 22, 2009 10:19 pm

Hi and thanks for the welcome and the advice. I'll be getting another appointment to see the Doc again tomorrow but have decided, after an absolutely awful weekend trying Citalopram not to take it any more. I'm going to ask for Amitryptaline as I've had that at a low dose before and it did seem to help the pain.
I will defo ask also for a referral to a rheumy, as yes I do get pain in other parts of my body but it's the neck/shoulder/migrain pain that is overwhelming at times. Thanks for that advice Gill.
If I get a firm diagnosis am I obliged to be honest with my employers about it? Or can I keep quiet and hope that I can manage it better?
One last thing, but not sure if it's the right place to post - has anyone got any advice about good mattresses? Is there any in particular that help reduce the morning stiffness and general pain?
Thanks again for all the advice - so glad to have found this forum.
Best wishes to all.
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Re: Newbie and curious from Bucks

Postby shazq » Mon Nov 23, 2009 11:29 am

Hi
Hope all goes well with your GP.
As for work i think its better to be honest about you having fibro.

Maybe print of some info from the site and ask your work place to read through it. You might need time off for hospital visits of illness so its better to let them know.
Hope you have a understanding work place.

A memory foam mattress is brill for stiffness, if you cant afford to buy a mattress you can get a mattress topper. (i have one). They work just as well.

Citalopram did not work for me either.
Lots of sufferers are taking Ami`s, i have just had my dose increased.
Have a look through the meds and treatments board, you will get to know what other meds are good to try.

Any other questions just ask. :wave:
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Re: Newbie and curious from Bucks

Postby LinzWorld » Mon Nov 23, 2009 12:26 pm

Neck/shoulder pain & stiffness plus migraines is quite likely to be a myofascial pain problem. Most Fibromites get myofascial pain but as it's a muscular problem it needs a different treatment approach. Myofascial release therapy (MFR) can be extremely effective - it's completely got rid of my intractable headaches and migraines.
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Re: Newbie and curious from Bucks

Postby fragglerox » Mon Nov 23, 2009 11:18 pm

Hi Lin & Shaz, and thanks for your replies. I'll have to find out more about Myofascial pain - not heard of that but the MFR treatment sounds very positive. Crikey, if I could get rid of that part of it i'd be over the moon! :D Is that treatment available on the NHS?
I saw yet another GP today, she has not seen me before so I think she felt a bit lost with it all but did listen to what I was saying. She gave me a prescription for Ami's which I'll start tonight and she has said she will talk to my regular Doc to find out where I can be referred. I know I am being impatient, i just hope something is finally happening now and I can get diagnosed.
Thanks Shaz for the tip about the mattress topper, I've been looking at beds but the most comfortable ones for me seem all to be at least £1200 :yikes:
Cheers all. x
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Re: Newbie and curious from Bucks

Postby gillshutt » Tue Nov 24, 2009 1:54 pm

Keep an eye out in your local paper, sometimes beds come up in there. There was a new double with a memory foam mattress for a few hundred in mine the other day. No good for me as I'd want a king size or 2 singles... hubby has restless legs and I'm tossing and turning like a spinning top :? So we need to keep as far away as possible from each other :lol:
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Re: Newbie and curious from Bucks

Postby shazq » Tue Nov 24, 2009 4:53 pm

Amazon are selling the toppers very cheap, they have lots reduced.
I just bought my parents one for Christmas, i ordered a pillow for both of us as well, i did not like the shape of the neck pillows so ordered the normal shaped pillows, the foam is so soft, lovely to sleep on.
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Re: Newbie and curious from Bucks

Postby LinzWorld » Wed Nov 25, 2009 9:39 am

I got a topper for our spare bed off Amazon and it's great - I even got a spare single topper to take away with us! Our memory foam mattress was from Ikea and was so cheap but is brilliant.

Info on MFR....
http://www.twonineofive.co.uk/myofascial.html

MFR isn't available on the NHS. Some physios know basic trigger point release (where they apply pressure to a trigger point until it eases) but IME, they are more likely to be private physios (with bigger budgets to get external training!).
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