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The UKFibromyalgia Forums • View topic - Hello from a possible sufferer in Norfolk



Hello from a possible sufferer in Norfolk

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

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Hello from a possible sufferer in Norfolk

Postby pinkemma » Thu Oct 29, 2009 10:33 am

I want to say 'hello' and 'wow'!!! My name's Emma and I'm 34.
I've been suffering from migraines and tension headaches since my teens but over the last couple of years my symptoms have changed and I now suffer from daily pain in my muscles, fatigue, and numbness in my legs and feet.
The GP's I've seen over the years have been pretty useless and all have tried the usual migraine medication and anti depressants. No one has ever considered my other symptoms (including myself) as it was thought they were just a result of my daily headaches and side effects of a lot of pain killers.
I've recently been referred to a neurologist at my local hospital and in an attempt to 'gen' myself up on headache possible treatments (I've already been started on a very low dose of Pregbalin) that I could suggest to him (even tho I'm sure that's his job) I've found myself reading more and more about fibromyaglia, and I've found myself relating to the symptoms and stories of suffering.
I've now found this wonderful website and forum and feel almost close to tears. You guys seem to be suffering from the same kind of pain on a daily basis, it's like I've found a room full of strangers who already know me inside and out.
There seems to be so much information I'm a little overwhelmed. If anyone can suggest where to start, how I approach this subject with the neurologist, anything that might help, I'd be eternally grateful.....

Many thanks and I look forward to conversing with you all xx
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Re: Hello from a possible sufferer in Norfolk

Postby shazq » Thu Oct 29, 2009 11:05 am

Hi Emma :welcome: to the forum.

Sorry to hear you think it could be fibro.

Ask your GP to send you to see a Rheumy, they normally DX fibro, once they have ruled everything else out.
Fibo doees not show up in blood test, so it best to see a Rheumy.

I am a migraine sufferer to
so understand how you feel.
Fibro has so many sympstoms so its a lot to take in.

Hope you get some answers soon. :hugs:

Look forward to seeing you around the forum. :wave:
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 from a possible sufferer in Norfolk

Postby LinzWorld » Thu Oct 29, 2009 1:14 pm

A neurologist can diagnose it though. Rheumies only get sent most Fibro patients because 1, it was used to be thought to be rheumatological and 2, many of the conditions that are ruled out first are rheumatological. However, Fibro is neuro related and other neuro conditions (e.g. MS) have to be ruled out too.

One thing I would definitely look into and ask about is myofascial pain. The neuro may not be up on this (it's a new-ish discipline, in the last 50 years) but they may be.

If you want, feel free to emal me via info@fibroaction.org
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Re: Hello from a possible sufferer in Norfolk

Postby pinkemma » Thu Oct 29, 2009 2:30 pm

Thanks for the guidance, it's already given me a place to start. As I have an appt with my NHS neurologist next week I'm going to speak to him about it, although I always feel like they're going to make out like I'm silly for suggesting an actual cause of my headaches and ongoing pain. Now I also need to find out about 'myofascial pain'.

Thanks again for making me feel welcome x
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Re: Hello from a possible sufferer in Norfolk

Postby LinzWorld » Thu Oct 29, 2009 3:38 pm

Devin Starlanyl is one of the leading experts on myofascial pain with Fibro. She's written a great book on it - have a look on Amazon.
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Re: Hello from a possible sufferer in Norfolk

Postby gillshutt » Thu Oct 29, 2009 9:15 pm

:wave: :welcome: to the forum :hugs:
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Re: Hello from a possible sufferer in Norfolk

Postby Les. » Thu Oct 29, 2009 10:59 pm

Where headaches are concerned i found that mine were food related. They were unbearable and mostly over my right eye, which would even wake me in the middle of the night.
I still get them occasionally and it might be a personal thing but mine were specifically related to Sodium.
Monosoduim Glutomate is a real no no, found in Chinese curry sauce, Walkers cheese and onion crisps to name 2 of the worst offenders.
What i did was to cut out anything that contained Sodium as a flavouring or food preserve including the following; Any salt cured meat, e.g. bacon, ham, corned beef, canned soups, asda chocolate chip muffins to name a few. Table salt doesn't have the same effect.
Surprisingly, and my doctor though i was crazy when i told him, but ASPIRIN actually gave me a headache!!! because it contains sodium.

You need to stop consuming it and then after a while re introduce things one by one until you find which is the worst offender.

Even some foods which are advertised as No added MSG actually do contain it. What the crafty beggars do is spray the crops in the field with it before it goes to the factory for processing. The people who actually passed it safe for human consumption were the people who produced it. There is masses of info on the web about this stuff but since researching it and discovering the effects it has on people who are sensitive i avoid it like the plague.

I now get a headache maybe once or twice a month if i've been adventurous or try something new for tea.

It's worth trying it out, my headaches were extremly debilitating and if i'm careful what i eat i'm fortunate not to get one
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Re: Hello from a possible sufferer in Norfolk

Postby pinkemma » Fri Oct 30, 2009 9:45 am

That's sounds like a long process but I'm glad you found the culprit. I know that when you're in daily pain you'll go through almost anything to get rid of it.
My headaches have been diagnosed as tension headaches caused by problems with my shoulders and neck, this is why I want to find the cause of the pain and fatigue I'm experiencing rather than just give up and take medication to get rid of my headache pain, which is what my GP just wants me to do.
I can see a long journey ahead of me....
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Re: Hello from a possible sufferer in Norfolk

Postby gillshutt » Fri Oct 30, 2009 11:53 am

Latest research has shown that a lot of FMers have problems which are symptoms of compression of the spinal chord leading to headaches etc. Unfortunately they haven't come up with an answer as to what to do about it.

Don't take too many meds as many can cause headaches, especially ones such as co-codamol which contain codeine. When I was on them I got a rebound headache everytime I took them.
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Re: Hello from a possible sufferer in Norfolk

Postby LinzWorld » Fri Oct 30, 2009 12:57 pm

Hi Gill, are you referring to the research on positional cervical cord compression (PCCC) done by Dr Andrew Holman and his team? They're working on a physical therapy program to manage the problem with FIbro and are getting good results. It's all quite basic though and requires a lot of work and commitment from the patient, with ongoing exercise being considered essential (my feeling is that many patients will refuse to do it!).

Most of their patients still need medications, but the PT prevents the PCCC being an ongoing factor and so allows medications to work more efficiently.

Headaches from tension in the neck and shoulders will be down to myofascial tension and most people with this would need myofascial release to benefit from the PT Dr Holman uses.
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