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The UKFibromyalgia Forums • View topic - Tentatively stepping my toes in...



Tentatively stepping my toes in...

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Tentatively stepping my toes in...

Postby Itsnotinmyhead » Tue Feb 11, 2014 2:14 pm

Hi
I'm a sixty year old mum of four and grandma to ten aged eleven months to seventeen. I'm not sure if I should even be here but I hope you don't mind and appreciate the time you are giving to read this and in effect listen and hear me. For many years I have been trying to get my GP to do that but I will just share my experience over the last five.

Five years ago I went to my GP with severe pain in my neck and left arm. This had been going on and off for some time but this time it would not go away. He sent me for physiotherapy but that seemed to make things worse so I had an X-ray and was referred for a muscular skeletal assessment. The assessment showed limited neck movement, poor reflexes and weak muscles in my arms and legs and balance problems. I was referred to a neurosurgeon.

In February 2012, after referrals and MRI,s getting lost, he performed a cervical foraminotomy and laminectomy which sadly did not relieve the pain.

In April 2012 I started experiencing tinnitus in my left ear. An MRI showed white matter issues that required monitoring, but I don't know what they were and have not had any follow ups. Bloods all okay.

When I spoke to my GP and neurosurgeon from April 2012 I kept saying that my problems were more than my neck and left arm. Both arms were painful. I couldn't hold and carry things I usually could because of weakness and pain. I couldn't even cut my meals up without pain.

I tripped over nothing, had terrible cramps, sleep problems, stiffness, pain when walking, Achilles Tendonitis in both heels, foot pain, was so tired all the time, became exhausted just pegging washing out or walking to the car. I could go on... and on. Each time I mentioned these other problems I was told 'we' needed to concentrate on my neck problems and see what that resolved first.
So all those symptoms carried on.

My GP prescribed BuTrans patches and ORAMORPH for pain plus Gabapentin and Amitryptiline, all of which I still take. When I still complained he prescribed Citilopram as he said the pain must be making me depressed which makes pain worse. I do try and keep positive and not let things get me down. My neurosurgeon said I had five damaged vertebrae in my neck and he could perform a C4-5 and 6-7 cervical discectomy and fusion but could not promise it would help but believed it was worth trying. I agreed.

The operation was in September 2013 and sadly did not help. Other than that there was nothing else he could do. After the operation the pain persisted in my neck and left arm and so did all the other symptoms (but my head did feel lighter on my neck).

I saw a new physio on my operation follow up and told her about everything. She examined me and said she would discuss me with the neurosurgeon.

He asked to see me in January. He said the physio had explained how I was feeling. I told him I had been trying to tell him and my GP for five years. He was really nice, said he would send me for nerve conduction tests and refer me to a rheumatologist because he thinks I might have fibromyalgia.

The doctor who performed the nerve conduction tests last week said they show carpel tunnel in both wrists that requires surgery. He also tested my muscles but did not comment on those.

I see the rheumatologist next month and am scared. Scared he will not hear me. Scared he won't believe me. I've felt ill for nearly fifteen years and sometimes it feels such a struggle.

I haven't mentioned to my family that the neurosurgeon thinks I have fibromyalgia, because it might not be that, and to be honest no one listens.

So, I really mean it when I say a huge thank you to you for taking the time to read this. You have no idea how much that means to me.
Last edited by FluppyPuffy on Tue Feb 11, 2014 3:29 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
― Maya Angelou
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Re: Tentatively stepping my toes in...

Postby Itsnotinmyhead » Tue Feb 11, 2014 2:18 pm

Sorry
I've duplicated this post and don't know how to delete it :(
“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
― Maya Angelou
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Re: Tentatively stepping my toes in...

Postby whoami » Tue Feb 11, 2014 3:00 pm

Hun, I hear you and know. "It's not in your head "

One of the hardest things about fibro for some is getting a diagnosis. Another is having people hear what you are saying.

You have had a lot going on but it finally sounds like you are getting sorted out. The physiotherapist will examine you and tell you what is going on. You will feel so much better emotionally when you get a diagnosis whether it is fibro or not.

I had the surgery for carpul tunnel on both hands. Carpul tunnel symptoms are pain in arms at time like they are burning. This pain can go all the way to your neck. Weakness, I could not hold a pencil without severe pain. The surgery made the world of difference. A lot of people with fibro have it.

Try to be positive. It is hard. It is looking like you are getting the attention you need and are being heard.

Take care and keep us informed. X
[i][b]

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Re: Tentatively stepping my toes in...

Postby FluppyPuffy » Tue Feb 11, 2014 3:56 pm

:cow-wave: :cow-wave: :cow-wave: and :welcome: to our little bit of cyber heaven. I've removed the duplicate post you'd made, thanks for pointing it, getting duplicated replies on the same subject can cause all sorts of chaos and confusion :-D :-D :-D

With the different things you've experienced over the years, it's understandable that you're feeling some trepidation about your appt with the rheumy. If you can tho, try to push some of that worry to the side, and see if you can look at this upcoming appt as the start of you finally getting some definite answers to what is the cause of your your various symptoms and problems.

You might find this a bit of help. As well as giving you an idea of what could happen during your appt, it also has some suggestions about things to do in the run~up to your appt that could help with getting across what you feel is important and relevant.

There is lots more info and advice across the boards, so have a bit of a looky and a read when you have a moment, there may be some other useful bits you come across that could be of help :cow-wave: :cow-wave: :cow-wave:


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Re: Tentatively stepping my toes in...

Postby bandj » Tue Feb 11, 2014 7:23 pm

Hello there, you're not going crazy and you're not alone :-) although fibro can make you feel that way.

I felt better just knowing what was wrong with me, I know there's no cure but finding this forum has helped a lot.

let us know how your appointment goes. Take care.
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Re: Tentatively stepping my toes in...

Postby Itsnotinmyhead » Wed Feb 12, 2014 11:17 am

Thank you for taking the time to read and reply to me.
I've read through so many posts on the forum and found lots of helpful advice and even reading other peoples experiences and recognising them helps. But how I wish we didn't need a forum at all!
Big gentle hugs to everyone :grouphug:
“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
― Maya Angelou
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Re: Tentatively stepping my toes in...

Postby denys » Wed Feb 12, 2014 2:06 pm

Hi and :welcome: to the forum :cow-wave: :cow-wave:
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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