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The UKFibromyalgia Forums • View topic - Hello all and not sure on FM.



Hello all and not sure on FM.

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

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Hello all and not sure on FM.

Postby PeterS » Wed Feb 27, 2013 6:17 pm

Firstly hello everyone.

My name is Peter and I'm pretty sure i'm 37 this year, tho to be honest I lost count ;). I live near Inverness in the Highlands of Scotland. And to be completely honest with with everyone on here, I have never heard of Fibromyalgia until a few days ago. Which may sound strange as I signed up to this site.

I have for the last 7 years suffered from Rheumatoid Arthritis and also had a Hydropneumothorax. But over the last 4 years, I've showed very little RA activity but its been a very painful 4 year's. Over this time period I have suffered head to toe pain, developed Migraines, Tension headaches, almost a constant sore stiff neck, lost of being able to focus and losing side vision in both or one eye. chest pains(which I've had an x-ray nearly every 3 months that shows nothing wrong),lower back pains, pain under my shoulder blades, burning pins and needles on the top of my back, pains in the sides of my backside, and the one that has bothered myself most has been extreme pain in both my calf's for over the last month. Over the year's, I've began to question if I have RA and not something else and have spoke to 3 different doctors about it and they all assure myself this is what I have!

I visited my Rheumy at the beginning of the month, and he stated that My RA is currently inactive and show no signs off joint destruction and whatever is causing these issues is something else! And on that grounds he has stopped my RA medication and has requested i try Amitriptyline. So doing a search on Amitriptyline this is where i started to be made aware of Fibromyalgia, i came across some information that its not uncommon to have both RA and FM. my GP's are more than happy to dismiss my extra symptoms, but now they should of received the letter from my rheumy stating he thinks it's might be something else they might start to look into it. So I'm just posting on here as I was wondering if any off the above symptoms sound like FM?

I've started keeping a pain diary which list body parts and amount of pain felt in them, this ranges from fingers,toes,hips,neck, headaches,thighs, chest etc etc .

Sorry if this has gone a bit off track with the intro.
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Re: Hello all and not sure on FM.

Postby shazq » Wed Feb 27, 2013 7:38 pm

:welcome: to the forum Peter :wave:

Your symptoms could be fibro but of course could also mimic something else as well? as fibro does not show up in any tests so it can take a while to get a diagnoses, some docs like to do other tests to rule other things out first so fibro can be last on their list.

Its good that you are keeping a pain diary as you can show your gp that.

You should have a look around the forum and see if you have any other symptoms and write all them down to show your gp as well.

Are you due to go back to see the Rheumy again? as it is a Rheumy who will normally give a dx of fibro, although some gp`s do.

Amitriptyline is a good starting med but can take up to 4 weeks to fully kick in but it helps for pain/sleep & depression.

We have lots of info on here, any questions just ask. :wave:
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Re: Hello all and not sure on FM.

Postby FluppyPuffy » Wed Feb 27, 2013 11:53 pm

:cow-wave: :cow-wave: and :welcome: to the forum Peter.

Sorry to hear what you've been experiencing over the past few years. A lot of what you have mentioned could be due to FM, but it could also be due to a number of other conditions, which can incl RA. Whilst it is good that there are no signs of joint destruction and that your RA is currently inactive, I can appreciate how frustrating it is for you having these various symptoms and problems yet not knowing what could be the cause of them.

For FM and other similar pain problems/conditions, Amitriptyline is often a med that is first tried to see if it can help with things. Altho originally an anti~depressant, amitriptyline has also been found to help with pain and also pain problems, which may be why your rheumy has suggested you trying it, to see if it helps with things. As Shaz has said, it can take up to 4 weeks for effects to be felt, so don't be surprised if you don't immediately feel any benefits.

Keeping your pain diary is a good idea as it can help with painting that overall picture of how you are affected and to what degree by your various symptoms.

Hopefully once your GP receives the latest update from your rheumy their approach to your problems will change and things will start moving more in the direction of you getting some answers as to what is the cause of things.

There is lots of info and advice on here, so have a look and a read around the boards, you may come across some suggestions to help you manage things a little more effectively.

Anything else you're wanting to know, just shout and we'll try to help you with it. If you're wanting a male perspective on what you're experiencing, there are a few male FMers who pop on now and again that may have some advice for you :wave: :wave: :wave: :wave:


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Re: Hello all and not sure on FM.

Postby PeterS » Thu Feb 28, 2013 12:32 pm

Thank you Shazq and FluppyPuffy for your reply's :-D

I'm sorry I didn't reply sooner, but I had a rather bad time off it not feeling so well last night. I did manage to read a fair bit of the site before I just had to switch everything off and go to bed. I have noticed that a lot of the symptoms of FM ring a very pain truth with myself and issues I've just simply dismissed and not thought about again, so I've decided that things like the dizzy spells and sore stomach etc will be listed in my diary as well as it might help someone get to the bottom off this if it isn't my RA. I also came across some of the symptoms that I don't experience or my naivety hasn't recognised the symptom's so reading this site has been an eye opener for me to be more observant over the less painful symptom's

@Shazq
I'm due back to see my rheumy in 4 month's, So I should have a full log for him to go over. But I also have my GP tomorrow as a follow-up from my Rheumy and see if we can get our heads around what he said on my last visit:

"Your RA is inactive, whatever is causing these other issues is something else, but there's so many things we class as Rheumatoid!"

And to get my prescription of Amitriptyline. And hopefully the next visit to my Rheumy I hope I have good news for himself.
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Re: Hello all and not sure on FM.

Postby shazq » Thu Feb 28, 2013 6:28 pm

Hi Peter

:fingerscrossed: you get some answers soon.

AS you are seeing your gp tomorrow here are a couple off NHS links on fibro, one on symptoms and the other on treatments, you could print them out and go through them with your gp. :goodluck1:

http://www.nhs.uk/conditions/Fibromyalg ... ction.aspx

http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx
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Re: Hello all and not sure on FM.

Postby PeterS » Fri Mar 01, 2013 11:10 am

Thank you very much Shazq. It's definitely something I'm going to bring up with herself today.
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Re: Hello all and not sure on FM.

Postby PeterS » Sat Mar 02, 2013 3:20 pm

Hello again,

We'll the doctors wasn't the normal waste of my time again, for the FMS I got a "Could be!"

And found out that my rheumy is sending me for an ultrasound scan, so I'll need to wait for that But I don't thing anything will show. I got my Amitriptyline which is 20mg a day, so need to give that time to get into my system. so all I can do now is just sit back and wait....
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Re: Hello all and not sure on FM.

Postby PeterS » Mon Aug 19, 2013 10:25 am

Hello again just a wee update,

well I finally got my ultra sound just over a fortnight ago, and it showed there was no Inflammation in my bloods and the ultrasound showed clear! so my RA is in remission and i never need to see the rheumatologist again (their words). So while I was there I was speaking to the rheumy about fibro and RA and he explained it to me that the RA affects the joints while fibro attacks everywhere else. I asked him about the pain in my arms,neck,backside,legs and that a week days before seeing him I couldn't put any weight on my left foot for two days as it seemed like someone had driven a nail through the top off it, the said that would be more fibromyalgia than RA. So the follow up question came Q) who do I see about fibro? A) no-one, theres no cure and no medication!

So I went home and thought about it and made an appointment at my GP's to speak to them about possible fibro, so had to wait a fortnight for an appointment to see the doctor and yet again "it could be!" here's some information printed off from the patient.co website followed with a goodbye.

I said to the doctor i could read all the information until the cows come home but i would like to know if I have fibro rather than all these could be's! that's was followed up with "its just something you need to learn to live with and the only medication is amitriptyline (which i have) if you have any more pains make an appointment to see me!" so yesterday I couldn't walk up stairs because of the pain and stiffness in my inner top leg. So decided to make another appointment with the GP to try and get a diagnosis. So need to wait another fortnight to see the doctor.
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Re: Hello all and not sure on FM.

Postby FluppyPuffy » Mon Aug 19, 2013 12:08 pm

It's goodto hear from you again Peter :cow-wave: :cow-wave:

Being told your RA is in remission is a nice update, pity you didn't get such useful answers to your other questions tho :-| :-| :-| :-| What the rheumy said isn't quite right. Usually for FM, it is a rheumy that someone is referred to, or another suitable specialist/consultant, it all depends on who has the interest/specialism in the area. And whilst there isn't a cure yet, there are meds that can bring some easing/relief from symptoms for us.

WRT your GP and wanting to know if FM is the reason behind what you are experiencing and feeling, in the time between now and your appt, you could have a look at this linky http://www.nhs.uk/conditions/fibromyalg ... ction.aspx as well as info on here and compile some notes which help show why you believe the symptoms you have and experience suggest that FM is what is affecting you. Then, when you go for your appt, take it all with you and go thru it all with your GP. Hopefully then, it will set you off onto a path that will take you to some answers and ultimately a dx.


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Re: Hello all and not sure on FM.

Postby denys » Tue Aug 20, 2013 12:41 am

Shame you arent getting any further forward, sometimes it feels like :banghead: :banghead: :banghead: :banghead: :banghead: :banghead: :banghead: :banghead: :banghead: :banghead: :fingerscrossed: :fingerscrossed: :fingerscrossed: for your next appointment
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Re: Hello all and not sure on FM.

Postby Jeany » Tue Aug 20, 2013 11:32 am

Hello Peter.
I have just joined this site myself today, and can not figure out how to introduce myself. Can you help me please.

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Re: Hello all and not sure on FM.

Postby PeterS » Wed Aug 28, 2013 12:07 pm

PeterS
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Re: Hello all and not sure on FM.

Postby FluppyPuffy » Wed Aug 28, 2013 2:45 pm

There is a lot of conflicting info Peter, which doesn't help us when we're trying to find our way thru it to see what applies to each of us :facepalm: :facepalm: :facepalm: :facepalm: There is also an awful lot that is still unknown about FM, so whilst something may be thought of being FM related at the moment, as more is learnt about the condition, it is possible that certain theories could be changed or even dismissed, esp as a lot of evidence for these ideas is still anecdotal.

Whilst it is regarded by the medical fraternity that FM doesn't cause swellings, on here there have been quite a few mentions of members finding that swelling has developed since they have been dx'd. And looking further across t'interweb, there are mentions on other FM related sites, forums etc that also echo this same point. Whether the root cause comes from the various meds that we take or from the condition itself, or something else or even a bit of a mix of everything, I can't really say, but there is strong suggestions from fellow FMers that swelling could well be related to the condition.

Based on my own experiences, the pain can affect anywhere, at any time, and in varying intensities. Whilst mine tends to be mostly random, unless it's an area that I know I have done something that has made it flare, I have also had the same areas on each side of my body affected at the same way, so it is quite possible that FM can have a symmetrical effect on the body.

And as for burning pins and needles, they are old friends with FM and often come along holding hands. It's not unusual for numbness to decide to tag along as well :facepalm: :facepalm: :facepalm: I have an old neck injury that was fused and wired together which seems to be the epicentre of things for me, with pins and needle often travelling down my arms and making my hands go numb. And at times it feels like the wire around where the vertebrae were fused is generating heat that is being picked up by the pins and needles as they flow past and out into my body :yikes: :yikes: :yikes: :yikes: :yikes:

As I've said tho, these musings are based on my own experiences, as well as recalling some of what has been said across the boards. There will be others who have different thoughts and ideas, and knowing just how vague and unpredictable is, it is more than possible that what
each of us experience all turns o.ut to be part and partial of the condition as a whole


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Re: Hello all and not sure on FM.

Postby PeterS » Wed Aug 28, 2013 8:33 pm

Big thank you once again FluppyPuffy for your advice and insight :-D

Well I'm just back from seeing the doctor and yet again I'm left banging my head against that wall. Now i said to the doctor about FM and all my symtoms and she said "it sounds like fibromyalgia, but as there was no blood test to tell if i had FM they she cant say I have it!" but what she would do is "give me a letter to say I can't work full-time any longer and could only do light work for a short time"

I'm just getting the impression that since my rheumy said my RA was in remission its case closed, the part im not getting is the "could be" heres some amitriptyline for it, heres a letter to say you cant work because of it! because of what???? I swear im starting to go mad now and if one more doctor said i'm depressed im gona put my foot up, well i dont need to finish that sentence :lol:

So now i'm just sitting here wondering what to do next. As thats my rheumy and two doctors i've seen and not one of them has done anything that the NHS site says on fibromyalgia.
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Re: Hello all and not sure on FM.

Postby denys » Wed Aug 28, 2013 11:56 pm

Think it might be time to think about changing docs, it certainly sounds as though they dont want to label you, but they are denying you access to treatment that just might help. If you know anyone in your area who has FM then ask them which practice they belong to and if they recommend any of the docs there

Jeany sorry I missed your post, all you have to do is click on the new topic button and then for the title just put something like 'hi' and then write a little about yourself and submit
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