FM? Could I have it?: Hello everyone... - Fibromyalgia Acti...

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FM? Could I have it?

xXCalleyXx profile image
19 Replies

Hello everyone

I wondered if I could get some help and advice. I have recently looked up the causes of many symptoms I have been having for years, but has got worse with age. I have not been diagnosed but FM came up when I was researching my symtoms. I am 23 years old and femaIe, I have had muscle aches and pains all over for years and as I got older I have noticed especially my back, neck, shoulders and legs hurt. I get cramps in my hands and feet easy. Every so often I get all over muscle spasums and these opccor mostly at night in bed and always before I am asleep.

I have bad hair thinning and hair loss. I have always had tiredness even with enough sleep. I often get events of extreme tiredness and/or headaches. My joints can ache and click a lot. One of my knees is the worst as it constantly clicks and I have had a operation to remove excessive scar tissue. The scar tissue was not there from any sort of injury and was said to be an unsual amount. The only thing that can relife me of pain on most ocassions is a hot bath or show, very hot! I have been diagnosed with IBS by my GP. I have aniexty very often and can feel low. I also have problems regulating my body tempreature especially at night I am like a radiator, even on cold snowy days like these with no heating on. The aches and pains do get better if I do the extra exercise such as the gym. If I stop the symptoms worsen the change of wheather can also effect this. My legs, arms, lower back and neck in particular get very stiff and sore, I can not sit in one position for very long and I have to constantly move. I get a pins and needles sensason very quickly in any part of my body. Every so often I get sharp sudden pains.

I am thinking to talk to my GP of my symptoms and mention I found out info on FM. The problem is I just moved to Germany and I am awating my Health insurance card. To me my symptoms match to those of FM but could it all be in my head?

Thanks for any help and comments!

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xXCalleyXx profile image
xXCalleyXx
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19 Replies
Ozzygirl64 profile image
Ozzygirl64

It is hard to tell hun as so many symptoms can overlap and could well be other illnesses. The problem with looking up symptoms online as that some people convince themselves that this is the problem. Not all doctors appreciate patients going in to see them and mentioning finding something online. Some doctors find it helpful but will not say 'oh yes it must be that then'.

One of the things you mention has me curious, the fact that hot baths and showers relieve the pain. Often in a fibro sufferer, even the fact they are on very strong medication will not relieve the pain. I stand corrected if I am wrong. Yes for me a hot bath may dull the pain slightly whilst in the water but most often it increases it.

There are ways of finding out if you have FMS and it normally involves a few visits to a rheumatologist so he/she can rule out other things. They will not give you a dignoses of FMS the second you walk in the door. FMS is the last resort diagnoses when no other cause is found.

Whatever the outcome I wish you well when you do see a GP, but please do not build up your hopes for an immediate diagnoses, it took me 4 years to be dignosed and that was with quarterly rheumy viists xxxxx

irisjoy profile image
irisjoy

Hi Calley

Your symptoms sound like those that so many of us have

Most of us waited a long time to get the fibro diagnosis and felt people didn't take us seriously about how our lives are

I certainly would take info to DRs along with a list of your symptoms, hopefully you will find a good DR who will help you with your meds , physio or whatever else is best for you

Please believe it is not all in your head no matter what others may say, it seems others can't imagine being in pain so much or for so long

i too have IBS as well as arthritis and asthma , quite often there are other conditions that like to tag along for the ride

Please take care and let us know how you get on , warm hugs xx J

xXCalleyXx profile image
xXCalleyXx

Hello,

Thank you for you comment, its just helpful to shed a little light on my questions while I am waiting for my health insurance. I knew it wouldbe a referal to a rhemy as I have worked in OPD as a health care assistant and in the operating department, I never thought to mention it to my fellow consultants and there was one brilliant rheumy consultant I worked with. I wished I would have asked him now. As for the hot showers I maybe chose the worng choice of words the pain does not disapear nor stop but it can help in soI me ways but not always and more recently that does not work at all...no over the counter painkiller works either.

I just wanted to post and get some advice as my symptoms seem so alike. :) I hope whatever it is I can be helped or a least have a piece of mind on the causes. I looked it up on the NHS and when I get to a GP will just explain my personal symptoms and take it from there. Sorry to hear you have been through a tuff time. Thank you for you info its much appriciated! :) many thanks and all the best. xxx

Ozzygirl64 profile image
Ozzygirl64 in reply to xXCalleyXx

I know what you mean hun about thinking it may be all in your head, believe me I got to that stage myself, I thought I was going mad and at one point I considered giving up trying to find out what was happening to me. I think we all ask ourselves just how so much pain can afflict us but no one seems to know why. A lot of us on here waited quite some time to get to where we are now and I for one hope that at some point you find out why too.

This is a great site, so member brilliant members all here to listen and offer support along the way. I really hope you did not think I was being rude in my reply, as that was not intended at all. In our practice we have one GP that is glad of any input and we also have one that goes mad and asks what is the point of him being a GP if I am going to go online before I see him, so you can understand what I am saying. But the hard part for us is that so many doctors either do not or will not recognise FMS as a real illness. We should not have to be the ones to get them to get up to date with it, it is just so unfair.

You will also see that a lot of members have more than one illness going on and it is so nice that we can share that with each other too. Support on this site comes in huge bundles I can tell you. I myself have not long been diagnosed with Lung disease and this was the first place I turned to when I could have gone to a COPD site first.

But they are a great bunch on here and you will see that we often laugh at ourselves and the things we do and the things we get wrong. And if you type in the search bar 'Poetry Corner' you will come across a blog started by our very own LibertyZ where we can put poetry about our ills, whether funny or serious. it is fabulous way to let everyone else see your FMS through your eyes.

No matter what the outcome for you I know you are very welcome here and I hope your insurance card comes through soon so you can make some headway in finding out what is what xxxxx Lin

xXCalleyXx profile image
xXCalleyXx in reply to Ozzygirl64

Ohh no not at all I am on my iPhone typing which is difficult with auto spell lol I find it hard to type for long before I get tired of it. No problem I didn't think you were being rude at all and it was not my one intention either. Aw that's brilliant I love poetry I have lots of poems of my own and one was I can really get my feeling out and feel a little better. I will take a look :) I have noticed everyone seems so helpful and lovely and want to help each other. I have had many replies already :) I know how GPs and consultants can be with patient! Rather rude and unhelpful and behind patients back as times. There are a few hi really do care! It's a good site to turn too. Thank you and I hope so too it's complicated moving here and still learning German I am getting there but dealing with my symptoms and the stress of moving here and all the changes I have to worse lately.

Best wishes

Calley xx

xXCalleyXx profile image
xXCalleyXx in reply to xXCalleyXx

Just looked at that again lol I really need to use my laptop for this lol iPhones are not good keyboards :/ lol

Ozzygirl64 profile image
Ozzygirl64 in reply to xXCalleyXx

Oh hunni, I was thinking then, if it did turn out you have Fibro and you get the dreaded fibro fog learning a new language at times may prove difficult. I learnt some Welsh, German, Spanish and French and do you know what I could not utter a single wrod of it now. But from time to time if I see a written language I know what some of it means without having to think about it. Other times I need the translator lol. I have a fab GP that never blames any new symptoms I have on the fibro, he rules everything esle out first and then blames the fibro. Some docotrs just say 'oh yes it is the fibro' without doing any other tests and that is so wrong on so many levels. Before I was diagnosed with lung disease I frimly believed that the pain was being caused by the fibro. the GP was not having it. He said 'I can hear loud crackling in your lungs, fibro does not cause crackling in the lungs' and off I went for x-rays. You could have kncoked me down with a feather, so many ongoing illnesses already plus the fibro making it 14 health problems to deal with and then this. But I lifted my head high and said 'well girl at least you know you still have bits of you left that were working once, if not now'. You have to look on the bright side though. And I do hope you put some of your poetry in poetry corner for us to share with you xxxxxx(and yes, stress really does make things worse, I think we will all agree with you on that one hunni.

xXCalleyXx profile image
xXCalleyXx in reply to Ozzygirl64

Hiya

I will wait and see :) today I am going for my Ortho appointment about my knee so at least something will be getting sorted but that something different and different pain. So now I have to see whats the outcome from that today either pshysio Therapy or maybe another operation or treantment.. I am getting along well with the language so I have been told I speak good and know a lot.. I undersatdn quite well as I have been with my German partner 8 years. So I have picked some up from being around him lol. You have tried a good few languages then! I am starting to read and write better but I do get the problem that I will learn words and know what the mean but at some times I forget it or just can't crasp it and forget everything I have learned :/ but I do know it just don't always come together. Thats brillian you have a good GP my new one seems nice and she is also my partners GP, she referred my strait away to the clinic and within 3 days I got a appointment so we will see how they help with all my other problems. :) I know exactly what you mean some doctors are lazy and some are actually interested in finding out th cause. I know from working with them they can be trouble lol, I always meantion where I have worked and work...they seem to not treate me so stupid then ;) . The thing is Germany is so big so I will have lots of choice if my doctor dont' help. I have posted some of my Poetry already :) I have lots I have written over the past year or two I have really got into it and have to jot stuff down as it pops into mind. Poetry really helps to get things out and relase a bit. TC xxx

in reply to Ozzygirl64

Thank you so much for this mention Lin, it's much appreciated and it's my absolute pleasure. So pleased you like our Poetry Corner! :D

(((hug))) xxx

Libs

in reply to

Here's the link to our Poetry Corner if anyone's interested, please feel free to cheer us all up and post your efforts on there any time! -

fibroaction.healthunlocked....

Ozzygirl64 profile image
Ozzygirl64 in reply to

Well when I get my head together I will get back in there and try and put some new stuff on myself. I think I did put one or two on recently, not sure. Fibrofog has an awful lot to answer for xxxxx 8-)

xXCalleyXx profile image
xXCalleyXx in reply to Ozzygirl64

I have posted a few of my older poetry and some recent and still have some I can post its one of my hobbies :) I love writting. I read some others posts on their, they are so good :) bring a smile and laugh to you xx

xXCalleyXx profile image
xXCalleyXx

Thank you Irisjoy :) Positive words are always helpful either way, I would just like to know whats wrong. I have for years put myself down as just being lazy or moany or that its in my head and people telling me its nothing. I will let you know how I get on once I manage a appointment. xx

Daphne profile image
Daphne

If it is any help/encouragement to you , I have a very good friend over in Germany in her fifties with all sorts of health problems and she has been recently diagnosed by her doctor with secondary Fibromyalgia. The point is, her doctor seems quite opened minded about this , is willing to discuss the subject and has actually recommended alternative therapies and medication for her to take. I find this quite amazing ( compared to the sort of treatment regularly meted out to us lot here in the UK) so with a bit of luck , you will find the same ! I hope you get on well in Germany.

xXCalleyXx profile image
xXCalleyXx in reply to Daphne

:) Thank you my GP so far seems goos and was quick to see me and reffer me about my knee. She was also really good at helping my partner. So I think if I go to her and mention my symptoms she should be of some help. That brilliant your friend gets the real helps she needs then. I feel bad for those who get treated wrong and don't get good GP's or consultants. I know whats its like working as a nursing assistant for consultants I always got so angry if they treated a person wrong... Thank you very much :) TC xx

Matrix profile image
Matrix

Hi sweetie ,well it could well be fibro but as one of the girls there are other things it could be .Regarding pain and I have had it over 50 years and no bath has ever stopped my pain.I think get refered to pain clinic they diagnosed me and that took many years as docs here don't in the main understand.

Have they checked your thyroid as that too can be a problem with those symptoms too.Cant remember if sleeping is a problem ,its one of the major signs for fibro .Its twenty mins past four am and I have not slept yet .Most fibees have lots of other health issues going on.I wish you well and hope you will get a diagnosis soon ,it does help I promise one way or another.Dont be scared its only a name and not one to get fixated on ,you can cope I have had mine since I was 12and I'm still coping so will you .x

xXCalleyXx profile image
xXCalleyXx

Thanks, yes I am thking also thyroid and just looking about for wether it was worth a doctors visit and what it could be... I hope its nothing too bad and something

xXCalleyXx profile image
xXCalleyXx

....I can get help with. I have always had bad sleep and odd fatigue, trouble with being tired all the time even after enough sleep. Again it could be something els entierly. I will have to wait and see. xx

Ozzygirl64 profile image
Ozzygirl64

I am just flying by right now hun but I normally check out poetry corner on a Sunday evening, part of my routine lol. But I feel sure without even looking that they will be brilliant. It is just a great corner to put into verse how we are feeling. And I may have one to put in there myself if I can get it to sound right. xxxxx Hope the ortho went okay

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