Hello all and not sure on FM.

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Re: Hello all and not sure on FM.

Postby PeterS » Thu Aug 29, 2013 4:22 pm

Thank you deny, unfortunately I don't know anyone with FM.

I was sitting pondering on my next step and like yourself all I could think of was to try a different surgery! So I sat reading the NHS choices website on FM mainly the diagnosis page and I thought, well there not doing what that page recommends so I might put in a complaint to the NHS. So opened the NHS complaint page and it recommend you take it up with the practice manager. So I went to my doctor's website and I've never heard of the practice manager, but I noticed that my nurse I seen for every fortnight for almost 10years for bloods was the Deputy Manager and just so happens to be my brother in-laws cousin.

So I phoned up the doctors to make an appointment to speak to Nurse/Deputy Manager and that was a mission in itself, as it wasn't for bloods they couldn't allocate a time for the appointment so she would have to get the Nurse/Deputy Manager to phone myself back. So 30minutes past and I got a return phone call from the Nurse and I explained all that had happened with the Doctors and the Rheumy. She said not to mind them and booked myself an appointment for Wednesday to see herself and to come in and get myself tested for the other things and she also recommended a Doctor I should see who is meant to be really good with these conditions and booked myself in for the following Monday which he should have all my results back.

So fingers crossed again.
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Re: Hello all and not sure on FM.

Postby PeterS » Tue Sep 10, 2013 10:25 pm

Another update on the topic:

I went to my appointment with the nurse and explained what had happened and she took my blood. So went to the doctors on Monday and the results from my bloods showed everything was perfect except high cholesterol. So that aside I explained once again about the maybe fibro and about my rheumy thinking its fibromyalgia but he doesn't think it's fibromyalgia! he think what I am experiencing which almost sounds quite plausible but for a few minor things is...........

That thou my RA is in remission, it's just means that the RA isn't active in affecting new joints etc, but what I'm experiencing is the damaged caused by My RA. So my constant stinging pain in my calves is pain transferred from my knee, the pains in my backside is cause by pain in my hips, top arm pain is from my shoulders and so on. He couldn't say about the pins and needles and the pain in my back. I did give him a long list of my newish symptoms and that my rheumy thought it was Fibro, there just wasn't anyone i see about it, and getting amitriptyline which as far as i'm aware doesnt do anything for pain or RA. But just seems to me yet another doctor that doesn't want to give me a diagnosis
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Re: Hello all and not sure on FM.

Postby denys » Wed Sep 11, 2013 4:28 pm

MMmmnnn difficult decision then, do you accept it or ask to be referred back to the rhuemy to be given the once over again as surely they will know if its old damage done by your RA :dunno: :dunno: :dunno: :dunno:
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Re: Hello all and not sure on FM.

Postby PeterS » Wed Sep 11, 2013 6:25 pm

I've been stewing on what the doctor said and yes it could make sense to a degree. but the part that doesn't make sense is if it was old damage I should be suffering with just those areas. e.g my fingers,wrist,knees. but because almost daily the pain changes from one part to the other backside, back of thighs, inside my top of my thigh, back, arms,neck all these pins and needles, feet cramps etc then it doesn't make much sense.

So I phoned up the nurse today to let her know what was said and what I've been thinking about and she kinda agreed that if it was old damage then that's what i should have daily. I also said to herself that one off 3 things is happening 1) Its fibromyalgia (as all other tests have come back clear) 2) My RA is very much active 3) I'm going mental! and she said that we have kind of reached the end of the road with finding out and I've to make a appointment in 2 months to get my cholesterol re-checked.

So i thinking maybe its think to go private as I've seen 3 doctors and not one examination, my rheumy thought it was fibro due to the backside and muscle pains . But he doesn't want to see me again unless its RA related and none of the doctors want to see me again unless its the cholesterol related.
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Re: Hello all and not sure on FM.

Postby FluppyPuffy » Wed Sep 11, 2013 7:28 pm

Not an easy one at all :-? :-? :-? :-? :-? A different doc could bring a different perspective to things, and is one of the things often suggested when someone is finding their concerns aren't being taken as a possible cause for problems. Is there a different rheumy you could be referred to?? Or maybe get in contact with the hospital/clinic to see if there is someone with an interest/specialism in conditions such as FM. Speaking to them may give you another route to try.

Seeing someone privately is always an option, it's just not always an affordable option. And if you did see someone privately, they could come to similar conclusions to what you have already been told, as there is no guarantee that they will be prepared to consider FM either.
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Re: Hello all and not sure on FM.

Postby denys » Thu Sep 12, 2013 12:38 am

I'm at a loss as to what to suggest to you extra to what Flup has said, if you can afford private then that may speed things up for you, but as has been said already its not a cheap option.

I think you may have to try to see the actual practise manager if you want to complain, as the nurse/deputy seems to be distancing herself, do you live in a town or a more rural area?????? just thinking that if its a town maybe one of the other practices may offer you a better option but if its rural then sometimes there arent that many practices to choose from.

It really is difficult when you dont feel your concerns are being taken seriously but one of the worst things about FM is the length of time it can take to actually get a firm diagnosis :( :( :( :(
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Re: Hello all and not sure on FM.

Postby PeterS » Thu Sep 12, 2013 11:44 am

@ FluppyPuffy
I'm now at the point where i think if see other doctor it's just going to be the same old story. I have asked about seeing a rheumy again but they just keep referring to his note on the computer that he doesn't want to see me again unless its rheumatoid related. I also asked the rheumy who I see about Fibro and he said no-one . So i will take your advice FluppyPuffy and phone up the hospital myself and see if i can see someone or at-least talk to someone.

I do have one option left and that's to switch practice sides, my doctors used to be one practice but at some point over the years split into two, so I'll try and register with the other side and see what happens their.

@denys
I live in Inverness so have most things on my door step, even have the medical research place. as for private It's a bill I really could do without but because i'm waiting on a start date for my new job (next 3 weeks) I would like to give my employer the reason why I might be a bit down on days,I have told him as much as I can about what it might be and the last doctor i saw before this one did state I could refer to it as Fibro they just wont give me a diagnosis .
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Re: Hello all and not sure on FM.

Postby denys » Thu Sep 12, 2013 5:36 pm

:goodluck2: :goodluck2: :goodluck2: :goodluck2: :goodluck2: with it all I hope you get some answers
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Re: Hello all and not sure on FM.

Postby PeterS » Fri Sep 13, 2013 12:05 pm

Thank you denys, a wee update I've to go into the doctors today to pick up a new registration so keeping all extremities crossed :)
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Re: Hello all and not sure on FM.

Postby Ashleigh90 » Wed Sep 25, 2013 2:10 am

Hi there sorry to hear about all these problems you've been having I do suspect I have FM and will be seeing a doctor on Friday. I've been doing lots of research on it and found lots of info on treatments- tramadol is good for nerve pain, co codimal is good for pain, amytryptiline is good for nerve pain and it helps you sleep, I was reading aswell that vitamin D might be low and it helps to get it checked out, also light exersise as muscles stiffen up, acupuncture and massage aswell, I also read that the pain we experience is not like any other person there is an imbalance in the brain where the pain receptors are stress and anxiety make it worse so learn to relax, do some reading walking meditation and hopefully you will feel better soon! :)
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Re: Hello all and not sure on FM.

Postby PeterS » Tue Oct 01, 2013 5:13 pm

Thank you for your reply Ashleigh90 :) thats one thing i can't do at present is relax.

@Topic

Well i finally got my registration accepted and finally got to see a doctor today, so went in explained everything and I get that FM is a term they use to explain a lot of symptoms and he doesn't want to give me the label of FM. Said it would be easier telling me what I didn't have!
sometimes they just can't answer the question and i just need to accept it (that my body hurts for no reason) and move on.

I'm starting to think this is a might big wall i'm hitting my head against. And i have to admit i am at the point of now doubting myself, starting to look for reason why i'm sore.
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Re: Hello all and not sure on FM.

Postby FluppyPuffy » Tue Oct 01, 2013 6:50 pm

Sorry to hear you're getting any further forward Peter :( :( :( Wish I could come with something positive for you, unfortunately I'm at a loss at to what to suggest that you could try to do next :( :( :( I usually try to find a possibility or bit of hope in a situation, but at the moment, if there is a glimmer in this, it's an extremely faint one that is doing a damned good job of hiding itself away. Normally with you registering with the new/other surgery, we'd suggest something like pushing to see a different rheumy again, but I'm not sure where that might get you :-? :-? :-?
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Re: Hello all and not sure on FM.

Postby PeterS » Wed Oct 02, 2013 11:34 am

Thank you FluppyPuffy, I'm not too sure on my next step again, do I want to start running thru all the doctors in this practice! I wouldn't mind if they actually examined me, but all i seem to be getting is there views and comparing these symptoms to my RA which I'm still being told is in remission and not active! (tho I've accepted this, I think there trying to convince themselves )

An example is my legs, I've been moaning since march about the back of my knees and calf's being sore and feeling weak. So bakers cyst where mentioned, but out of the 5 doctors not one of them have looked!not only my knees but anything. And tender points have never ever been mentioned tho if for example I push the one on the back of my neck (left side below the middle) it just doesn't become tender its bloody painful.

And all that aside, I'm not even sure if this is related FM but on Saturday morning I was outside and my face (whole face) went numb and my right hand started shaking lasted for about 3-5minutes. Mentioned that too the doc and simply got dismissed.

I can't see another rheumy as this one has stated that he doesn't want to see me again unless it rheumatoid related, so that's what the doctors are doing. My Rheumy brought up the whole FM issue but because he never wrote any off it down on paper then it seems as if they don't want to act on. i brought this up with them that the body pains at times can feel like RA so how do I know what's something else or RA related!
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Re: Hello all and not sure on FM.

Postby PeterS » Wed Apr 22, 2015 6:01 pm

Hello everyone hope nobody minds me bumping this thread, thought I'd post a little update.

I'm getting a little bit further forward in my quest to find out what's wrong with myself and I finally met someone I knew with fibro :) Which has been a great help to bounce some of my issues off to compare and sharing there experance on how they had to keep going to get there DX, but I'm still being let down with my GP's. I finally got an appointment today with a new Rheumy after countless wasted trips to GP'S and switching to other practices.

So today went well with this new rheumy, gave me a complete going over (reflex's, joint movement, joint condition, listened to my chest etc ) and said that's I've had RA in the past but there's no signs of it being active. So I explained my whole situation and i was shocked that he took the time to listen and gave me a lot of advice even about medication I used to take and he didn't rule fibro out just said it was hard for the DX. So he sent me for bloods and ask for six different tests RF, CCP ,ANA ,ENA and I never caught the other two he requested. He also sent me for X-rays for my hands,feet and chest. So should get the results in 10 days. So hopefully this is going to be the start of something and not just the "everythings normal, goodbye".
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Re: Hello all and not sure on FM.

Postby Zia2014 » Thu Apr 23, 2015 5:05 pm

Good to hear you got a good rheumy and they are doing thorough tests. At least you are on that road now.

I agree that it's invaluable to bounce things off friends with fibro :)
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