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The UKFibromyalgia Forums • View topic - What do you think



What do you think

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

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What do you think

Postby Shaun233 » Sun Feb 02, 2014 2:19 am

Hi I'm new on here and have only recently been diagnosed with either fibromyalgia or chronic pain syndrome

I have suffered with severe depression for over 10 years I take amatriptoline 60mg and miazipram also suffered with acid for a number of years and have to take lansaprozol

in December 2012 I had aspirational pneumonia and had a spell in hospital

Then in May 2013 I got pain in both knees doctor sent me for X-rays which confirmed that I had arthritis of the knees he said that I had had it for a number of years as it had started to ware away the cartalidge

At roughly the same time I started getting pains in my left elbow which I also put down to arthritis in july I started getting night sweats and back pain between my sholder blades I went to the doctors and they thought that I had pneumonia again

Since then I have never felt myself I was getting chest pain and shortness of breath I was sent for a chest X-ray every thing looked fine
So I was given a spirometer test (to test lung function) again every thing was fine

Im still getting chest pain shortness of breath and feeling generally unwell the pain in both knees and left elbow was still there I was given naproxen for the arthritis which helped with the knees

In October I also started getting pain in my fingers mainly the little finger and tingling in my index finger I had also been sweating you could literally wring out my clothes also my wife would have to change the bed sheets at night on occasions due to sweat

Then in November 2013 after an argument with my oldest son he's 17 I had severe pain in my left arm I took pain killers tramadol and after about 20 mins the pain was still there so I called a doctor who then called an ambulance I had various blood test done very thing came back fine the hospital recomended that I have a stress test done on my heart for angina

I had the stress test done at the beginning of December (I had to have the drug induced one where a drug is put into a vain to make the heart beat faster) they came back clear

By this time I had also started to get pain in the back of my neck shoulders both hands elbows And lower back right jaw,face and temple I was having trouble with vision this was picked up at a routine visit to the optician I was getting blurred and double vision when going out as soon as I opened the front door I would get terrible pain in the back of my eyes and that would trigger head aces that would last for hours I'm getting dizzy spells I am also suffering with short term memory issues but I'm not sure wether this is down to medication I'm also constipated on some days I don't go at all other days I can go several times but never do much also I'm urinating more frequently and my bladder doesn't seem empty I still feel that I need to urinate more

I am now under a eye specialist he says that the muscles in my eyes are weak and i have dry eyes now have to put drops in each eye 4 times a day also the blood vessels in the back of my eyes look under pressure and advised that I had a blood pressure check at my GP which I did and it was fine

By the end of December 2013 I had had lots of blood test done all had come back normal and the doctor thought it was down to the depression that I had as all blood test were fine

I asked if there was any conditions that wouldn't show up with blood test and she said fibromyalgia or chronic pain syndrome and gave me a website to look up the systems

I do have a lot of symptoms that people get with fibromyalgia but don't get pain with touch and I'm not sure that I have the 11 point system that I have read about probably only about 8/9 out of the 11

At the end of December I had a ecg done that showed that I had had a minor heart attack at some point recently they thought that it may have been just after the stress test at the beginning of December

At the beginning of this year the doctor asked for some more blood to be took they came back that I had phosphates levels that were high she thought this was down to diet and that my liver function test had come back 3 times above normal limits even though I had recently only had it done she asked if I'd had a lot to drink over the Christmas / new year period which I hadn't

She has just taken some more and as far as I'm aware every thing has come back normal the liver function definitely has she thinks that with having children at school age one of them could have got hepatitis A and passed it onto me that's why my liver function came back abnormal

She has now put me on pentagabin only 100mg a day for a week and then 200mg a day the second week then 300mg the 3rd week then I have to go back for a review to see if it's helping

Others things that I should mention are I'm really tired each day I'm not sleeping properly at night even though I'm taking the amatriptoline which is the only thing that has ever worked for me I'm extremely stiff first thing in a morning and on a few occasions I have had to shout the wife to help me out of bed and to help me put a t shirt and jumper on

Also on some days I'm struggling cutting up food due to pain in fingers and wrist and I have had to take breaks eating food as pain is so severe in my shoulder that when I try to bring the fork to my mouth it's really painful so I have to stop for a few mins then start again then pains severe again so I stop I'm really worried that at some point in the future I'm not going to be able to feed myself

Also now I'm getting pain in my feet and ankles I have recently got a large blister that is taking its time to go don't know how I got it doctor thinks I've been wearing my shoe too tight which is definitely not the case I'm still havering pains in my knees and struggling to walk I'm getting back pain but not sure wether it's from fibro or if it's my posture from not walking properly

I have tried to give a bit of detail to my history what I'm asking is what do you guys think is causing my symptoms all this only started about 8 months ago and my doctors have been quick to say its fibromyalgia or chronic pain syndrome although she does tend to be more drawn to fibromyalgia I know I'm only on a low dose of the gabioentin at the moment but it doesn't seem to be doing much i have been very down recently and have even considered ending my life I'm fed up with the constant pain I also have a daughter that is only six months old she's just about managing to keep my head above water but I can't do any thing with her I can not even give her a cuddle last time I tried I dropped her and I'm scared to death of doing it again I feel I'm becoming a burden on my wife I'm only 42 and have always been physically ok when I feel well enough to go out my wife carry's our daughter and does the heavy lifting. Then I get people looking at me like a scum bag for not helping my wife this gets me depressed and makes me not want to go out its a vicious circle one or two of my friends don't believe what I'm saying they think it's all in my head they have more or less told me so

At the moment I have only got pain in my fingers left hand right shoulder and knees the pain seems to last a few weeks to a month then moves somewhere else I do get pain in other parts of the body on a daily basis but this comes and goes where the pain in my fingers , knees and shoulder is there constantly but with varying degrees of pain my GP thinks that with being depressed then I am concentrating more on the pain and this is making the pain worse than it really is
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Re: What do you think

Postby Purplepig » Sun Feb 02, 2014 3:45 am

Poor you, your symptoms sound like mine. It's awful, I can't cuddle or hold my grandchildren, sounds just like youXX
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Re: What do you think

Postby relf1960 » Sun Feb 02, 2014 4:19 am

Omg! Where do i start? Lol.
Firstly, im sorry to hear your suffering so badly. Join the club! Unfortunatly theres loads of us out there, some worse than others. We all have various mixes of symptons, which theres over 200 of for fibromyalgia. Ive not heard ofchronic pain syndrome, only chronic fatigue syndrome, which is very similar to fm, fibromyalgia in the short form, and whatdistinguishes these two illness out, is in fact the pressure points. U dont have these with cfs, short for chronic fatigue syndrome.

Now,where u say u have 8/9 of the 11, this isnt actually correct. There are 9 pairs, totalling 18, n u have to have at least 11 of the 18 to have fibromyalgia, or so they say. I e got the 18 plus some. But im always different. Luckily ive not got the horrible, painful to touch the skin, thing, and its not something many of the sufferers i know have either. I suffer badly with acid too, and havemy entire adult life. I take 40mg omeprazole, and still suffersome days.

Ibs, known as irritable bowel syndrome, is a well known sympton, again ive suffered for donkeys years, im 53. With ibs its either constipation or diarhea and lots of wind n pains. I too have the dry eye and sometimes my vision is blurry. Having to keep getting your glasses changed due the prescription altering is quite normal with fm too.

Fm sufferers do tend to get arthiritis, which ive got in various places and had a hand n a shoulder op for this n need another hand op too. I have a frozen shoulder, which is getting better, but ive had for 2 yrs, n its been agony. This again is something u get with fm, as is cervical spondilosis, which i have, n i suspect u may have too. Its when the vertabraes where your neck and spine join become damaged. It causes neck, shoulder and even arms n hands problems. Get a xray for this. Its another form of arthiritis.

U r allowed 3 steroid injections a year only, for health reasons. So choose wisely. They are not always successful, sometimes a second one maybe, but ive found if it dont work the first time it dont work the second time either. I had a very successful one in my knee. It wasnt very painful to have done, but that night i was in agony. It was well worth it though. I had 1 in an elbow for eithertennis or golfers elbow, and that was brill too. The ones in my shoulder and hand didnt work, hense the operation. The one in frozen shoulder dint help either. They cant give them in neck, but my neck dont hurt, its the referred pain from it that hurts so much instead, as in my shoulders, arms hands and upper back. U cant have steroid injections in the back either, thats where most my pain is!

Problems with sleeping is one of the most common problems with both fm and cfs. Its due to the fact that sufferers dont get stage 4 sleep, that we do t have much energy, cus its that that gives u the most restful sleep. Its also why we have memory problems and such like, because we havent managed the proper rest we need. Theres other simular illness too. Theres M.E. and lupus. So read up on them all. I did, when i self diagnosed that id got fm, after doctors always saying it was depression and anxiety that i suffered from, n i new there was more to it than that. Although, with anxiety the list of problems u do get is very long too, even get the pain.

Unfortunatly, fm and the others ive mentioned tend to give us the anxiety n depression too anyway, just a load of other things too!
U mentioned your bladder. I too get the feeling that i need to go straight after ive just been for a wee. Some times if i sit long enough, i do a second wee. But even then i can be back to loo 10mins later. Sometimes when i feel bursting, i can do a whole teaspoon full, n feel empty. It drives me mad.

Well ive probably only covered half of what u want to know, but ive forgotton the rest n i must get some sleep, if at all possible, after my next trip to the loo. I will read your post again tomoz n see if i can help u with anything else. Thats if i remember of course! Take care wendy x
Last edited by FluppyPuffy on Sun Feb 02, 2014 10:37 am, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: What do you think

Postby Purplepig » Sun Feb 02, 2014 4:27 am

I empathise with you, sounds like me and previous response x
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Re: What do you think

Postby Garyl » Sun Feb 02, 2014 9:33 am

Seems similar to my probs i just carry on and smile say that others have worse problems then me I did manage to get some sleep last night until i turned and laid on my rm and hand and pains started . I have trained myself not to sleep on arms and hands.
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Re: What do you think

Postby Monty99 » Sun Feb 02, 2014 10:35 am

It definitely sounds like you have fibre…..poor you. It took years before I was diagnosed and all I can say is that, believe it or not, you will get to feel better eventually. NO the fibre does not go away, but you will learn to manage it effectively by not doing the things that aggravate it, learning to say NO, learning not to promise to do something early in the morning and above all getting enough sleep. This is the key, you must get your doctor to prescribe you something to put you into Stage 4 sleep. Once you have enough of that they all symptoms will become easier to deal with and in some cases symptoms may disappear, albeit temporarily. Do not be afraid to stay in bed when in pain, you must listen to your body and do not push it at all. Recognise your triggers and that will help. I could be standing preparing dinner and I notice a trigger and leave the preparation immediately and rest, a bit irrational you may think but believe me I know how bad I would be if I carried on. You will have to make lifestyle changes and choices that may not sit well with you in which case I would recommend you get referred to a psychologist who will certainly help. Without me seeing them, then I felt like ending it all too…..
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Re: What do you think

Postby FluppyPuffy » Sun Feb 02, 2014 11:07 am

:welcome: to the forum Shaun :cow-wave: :cow-wave:

I've moved you over into here with this being your intro post as it's a more suitable board, so you should hopefully get some useful replies :fingerscrossed: :fingerscrossed:

You'll appreciate that we can't say if what you have described is FM, CPD, or any other condition. A dx can only be made by a suitable doc, be it your GP, or a specialist/consultant. The things you have mentioned can, and are shared by a number of other conditions, all of which need to be investigated fully. It tends to be when all these other possibilities have been ruled out that an FM dx is arrived at. It sounds like your GP has been extremely efficient in the tests and things you've had done, which is what you want and need when trying to find out the cause of such varied symptoms and associated problems.

Is it Gabapentin or Pregabalin that your GP has started you off on?? Just wondering as what you have called them is a mix of both names :-D :-D :-D Either way, they both work in a similar sort of way, which is thought to be by calming the brain's electrical hyperactivity that sends out the misfiring pain signals we experience. If you have only just started taking them, you may not be feeling any benefit yet. This is because the dosage needs to be built gradually over a suitable period of time. As this happens, the levels in your system increase, and so you start to feel it starting to make a difference, hopefully :fingerscrossed: :fingerscrossed: For this to happen, it can take about a month, altho for some it can be 2~3 months before they feel any benefits.

You need to ask your GP which condition she thinks it could well be. If she is still unsure, or reluctant to give you a definite dx, you could ask about a referral to an appropriate specialist to see what they say. It tends to be a rheumatologist that deals with FM and similar conditions, altho in some areas it can be another specialist, such as a neurologist, that has the interest and deals with them.

A lot of the things mentioned in a previous post, such as steroid injections, are available as treatments, but tend to be offered further along the line when other options have been tried out, so for now try not to worry about things that might happen in the future. The same applies to other associated conditions that may develop along the way. Whilst some do develop the kinds of things mentioned, it doesn't happen to everyone. What is important is focussing on the now, and finding out what it the cause of your various symptoms and problems, and then starting off on the quest to find the right mix of things that help make a difference to you.


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Re: What do you think

Postby Shaun233 » Sun Feb 02, 2014 2:48 pm

Hi everyone

Thanks for the replays it's good to chat to people that know what your going through each day

I am taking gabipentin 100mg per day for now I have had the injections in my left knee a few times but with little effect the doc has mentioned that that she was going to send me to see a pain specialist when I went earlier this week I saw a different doctor and he wasn't uptown speed with what has been going on so when I go back which I need to do some time in the near future I will ask about the pain specialist and also what she thinks my condition is

Thanks for the replays there is some usefull information in them and I've got a good idea of what I need to ask

Thanks again shaun
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Re: What do you think

Postby denys » Mon Feb 03, 2014 12:42 am

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