Plymouth Fibromyalgia Sufferer

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Plymouth Fibromyalgia Sufferer

Postby Ambercatgoddess » Thu Mar 21, 2013 2:57 pm

Hello everyone. I am glad to be added to this group so that I can possibly find more solutions to this thing that we all live with everyday. So far I have gone through four GP's at the local Roborough surgery with no success. They have said things to me such as: *There is no magic pill to make this go away* *There is no cure all for this* *There is nothing more that we can do to help you. Go to the pain clinic.* I have never been a fan of condescending healthcare *professionals*. I do not enjoy being spoken to as if i lack any common sense at all. IT hurts my feelings a bit and makes me feel as if I am speaking to someone who is so certain of his own superiority that I am nothing but a talking monkey basically. Thats how they make me feel.

I was sent to Derriford to speak to a rheumatologist and he stated that yes I have fibromyalgia. We had been trying to tell my GP this but he ignored me. I was sent to hydrotherapy and the person that saw me held me roughly and it hurt. When I said it hurts he looked at me like as if to say 'whats wrong with you?' i almost facepalmed. But kept calm and said I have fibromyalgia. He said I know..uhm if he knew why would he handle me so roughly? So my occupational therapist thinks that I need more pain management. But I have not received anything more than the two pills cocodamol and amitryptaline.

Yet from what I have learned of Fibromyalgia is that it is a blanket term for these *professionals* who cannot figure out what is wrong with people. Well there is alot wrong. I also suffer from back pain from spondylosis, curvature of the spin, nerve damage, and sciatica. But they mostly ignore this and focus on the fibromyalgia being the cause of everything. Well it is not the cause of everything at all. So it has become a bit like speaking to a wall.

My GP said go to the pain clinic so I waited a year and two months to be seen. When I get there I spend two hours talking to a psychologist who tells me we do not give any pain relief here. We listen to you and you can talk in groups. I tell her I have already made many changes. Everything that is recommended and some that just made sense to me. One I was in a wheelchair in America and having no heath insurance I was told I would never walk again. I did it on my own. It took a year and I walk now although through not getting professional help I now have problems with one leg not functioning properly. I cannot lift it at certain angles and it hurts when i try. There are some positions I need help lifting my leg. During that year I gained one hundred pounds give or take a few. I have gone from weighing 300lbs almost to 194. I went on a plant based diet. I do not smoke or drink. No fast food at all no sodas and I am healthier now than I have been in my whole life.

So I tell the psychologist this and the fact that I found Buddhism and meditate and she was pleased by this. She suggested that I could lead the group in Derriford. But what is the point when as i sit there I have shooting pains, itching sensations crawling over my body, hives, headache and nausea just sitting there? I am going to do it but I just don't know what else to do. The healthcare people practically ignore me.

I told them that when it gets really cold my pain gets worse. Do they listen? No they have given me so many different medications and they did not help. Right now I am on Cocodamol 30/500, Amitryptaline 10mg and this is it. It barely helps. When I called in for a refill they asked me. ' Did you take the full recommended dosage?' i said ' yes' they responded sounding none too pleased 'oh you did?' sigh..yes I did it because I am in constant pain. I need help..something because I don't know what else to do. The NHS has pretty much ignored me.

Any ideas?
Ambercatgoddess
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Re: Plymouth Fibromyalgia Sufferer

Postby shazq » Thu Mar 21, 2013 6:21 pm

:welcome: to the forum Ambercatgoddess

Sorry to hear you are not having much luck with your doctors, having a good understanding gp does make a big difference with fibro.
Getting your pain under control can take a bit of time but not impossible, its just finding the right type of med or combo that suits you.

You could try changing your gp surgery but call the practice manager first to ask if any of their gp`s have any fibro patients on their list.

You are on a low dose of Ami`s so you could mention to your gp that it is not working and could the dose be increased?

Here is a link of some common meds used for fibro you could print them off and show them to your gp and ask to try some? They are from a NHS web site so it would be interesting to see if he disagrees with any of the info. :goodluck1:

http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx
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.
Fibromyalgia Awareness Day May 12TH.
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Re: Plymouth Fibromyalgia Sufferer

Postby Ambercatgoddess » Thu Mar 21, 2013 7:33 pm

I may have to change my surgery honestly. I am trying the fifth and last GP that is there and he will not give me anything else. The tried a few drugs with me one was the generic Lyrica and it literally did nothing at all. Nothing good or bad so hey at least no side effects. I try to see good in everything.

I mentioned that the amitryptaline was not enough and they said they could not increase the dose which sounds odd to me.

I have not been to see a neurologist yet and I think I should good point on that page.

The thing that kills me is that they sit and listen to me and at the end look at me as if to say ' What more do you want' I know there is no miracle cure but how am i supposed to function? There are times i have such low energy I have to take off my jewelry from my wrists because it feels so heavy.

Lately I have developed something that well I will try to explain. I will be laying in bed and put my arms in typical positions but then I start to get a sharp itch like a sharp pain. I cannot ignore it and it makes me twitch. I developed hives also because of the stress from not getting help that I need.

I will try again but in the end I may end up having to go to another surgery because they just do not listen at all. I do not think they have a good grasp on what fibromyalgia really is.

Thank you for writing back I am grateful for any and all help.
Ambercatgoddess
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Re: Plymouth Fibromyalgia Sufferer

Postby shazq » Mon Mar 25, 2013 5:33 pm

:goodluck1: Hope you can get your gp to listen to you. :hugs:
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.
Fibromyalgia Awareness Day May 12TH.
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shazq
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