I have had a disability which affects my mobility and causes me severe pain on a daily basis for the last 26 yrs, I am only mentioning this because I'm not sure whether this has been masking my other symptoms, the ones that the doctors don't seem to be able to diagnose.
Please bare with me, I tire very easily and I forget the timeline etc, I will try and cut a long story short, here goes, over the last 2 yrs I have noticed that I get very confused and forgetful and when I'm talking I struggle to find the words that I want to use , its very frustrating, I used to be quite articulate and a pretty good conversationalist, I had test for Alzheimers and it was OK, the doc says its my age(I'm 52!) Over the past 7/8 months I have been more or less bed ridden, my symptoms are, mostly pain and weakness, I'm so tired its ridiculous! I hardly sleep and when I do, I dont feel as though I have, I wake up exhausted, in agony as stiff as a board, my shoulders and neck are really painful at the moment, even the slightest touch sends pain shooting down my arm to my finger ends, I get numbness in my arms and hands and it travels right up to the back of my neck and into my head. I have really bad headaches which aren't helped, in fact are often brought on by bright daylight, or fluorescent light(being treated with large dose of Topiramate)I also suffer from severe dizziness,I feel like I have been on a sea fishing boat! It is bad enough that the consultant has told me that I'm not allowed to drive! I have had a CT scan and had a brief exam with a neurologist, who referred me to an audiologist, who did some tests on me and found that the only reason she could give me for my symptoms is maybe migraine,however, the medication that she gave me for migraine, topiramate, has not relieved my symptoms at all and I have been taking it for 7 weeks now. I have many other symptoms, blurred vision, I have had my eyes tested twice and the optician hasn't found a reason for these disturbances, my short term memory is really bad, I cant remember what I had for lunch or relay back a telephone conversation I had two mins earlier and I am finding I'm forgetting things that I've know for years like phone numbers, dates of birth and passwords,I cant concentrate and loud noise really gets to me, also I find that I cant retain information, what I mean is, if I'm reading, I have to keep going back over what I have already read because I have forgotten what it said? My whole body is ultra sensitive to pain, it sounds ridiculous but, I cant wear jeans or anything tight because it is actually painful, I am depressed and anxious all the time and my hips hurt so much I would describe it as feeling like I have been horse riding on the fattest horse in the world!
I have had two people ask me if the doctors have mentioned fibromyalgia, one has been a sufferer for the past 10 years, the other is a health visitor, the answer to that question is no, none of my doctors have made any suggestion to me that that is what might be wrong with me, I hadn't even thought about FM until it was pointed out to me, now it has, I can see the relevance. I am asking on here what people think because I don't think anyone knows as much about this illness as the sufferers themselves, I would be very grateful if you could have a read of my post and tell me if you think it might be worth mentioning FM to my doctor, I don't want him to think I am trawling the internet trying to find something wrong with me, but after being ill for 8months and still not knowing what is causing it, I am beginning to think that the only way is to diagnose myself or at the least point him in the right direction. Sorry this is such a novel,I cant believe I said at the beginning that I was going to cut a long story short!! You all must be very relieved to be getting the short version! This has taken me hours and hours to type up so goodness knows how long the 'long' one would have taken me! Thank you so much for your time.
Kind Regards
Snickypoo
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snickypoo
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Good name/handle sorry to see you have had such a bad time of it. If your doctor hasn't mentioned fibro have you been to a Rheumatologist? Thats the guy who will eliminate everything and proclaim if you have Fibro.
I must admit when you know what it is it helps you a lot. I think because we all search for answers for so long to actually accept it is Fibro means we can do our own research on it and talk to like minded souls.
I hope this helps so do pop to your GP and get a referral it can only help!
I would just like to start by saying thanks for replying so quickly, I really appreciate it, I haven't been to a rheumatologist as yet, my GP has been focusing mainly on my vertigo,headaches and vision problems up to now. As I said in my original post, I think my disability has been masking my pain symptoms, I have a spinal condition which severely affects my mobility and causes me severe pain for which I have to take a lot of pain medication and use a tens machine, I'm starting to think that if I have got FM I have been managing the pain side things without realising it, which could be why FM hasn't flagged up to the doctors before now?
I will make an appointment with my GP (if I can get past the militant receptionist!) and I will let you know how I get on, thank you so much for the advice, it has given me a bit of a boost to think that there are kind people like yourself and the other members on here that are willing to take time out of their day to help and advice me.x
Hi snickypoo, good handle, it does sound as tho you maynhave fibro, there are fibromyalgia doctors that deal with just that, tell your doctor you feel it may be fibro and would like to be referred to a fibro doctor, and don't take no for an answer, you have suffered long enough, I think there is a site on here that can tell you how to try to get an idea yourself if u have it, I think gins will be able to point you in that directions, there are 18 pressure points for fibro and you must have at least 11 of these, in wich case if you have then you can go back to the docs with this information, tell him you have some of the symptoms.....do hope this helps...remember we are all here for you anytime, just com on and there will always be some one here to talk to, and we have a laugh too amongst the tears....sending you gentle hugs ...Dee xx
I am actually astounded at the response I have had from my original post, I never expected to have so many lovely caring people prepared to reach out to try and help someone who they've never met, it warms the cockles of my heart! Thank you for that! I have seen the pressure point test that you are talking about, I got my son to test me and I had all 18 of them, however, several of these points are in the area where I've had my spinal surgery's and are very painful anyway, so I'm not sure? I have also found another updated test that the American College of Rheumatology have come up with which takes all the other symptoms of FM into consideration, not just the pain, and I have got FM according to that test too?
My next obvious move is to make an appointment with my GP, I want to thank you for your help and advice, just knowing that there are people such as yourself and the other members on here is such a nice feeling!
you are most welcome snicky, itr does sound as tho you have Fibro, as you say your next step in the Docs and ask to be referred to a fibro specialist, but do keep in touch and let us know how things go....gentle hugs to you ...Dee x
I think many of your symptoms and experiences do seem to relate to fibromyalgia. As gins says make an appointment with your G.P. and tell them a Health visitor had mentioned the possibility of fibromyalgia and ask if they can refer you to a Rheumatologist. If your own G.P. knows little about fibromyalgia, maybe their is another doctor in your practice you can see instead. Before you go make a written list of all your symptoms ( with fibromyalgia I find it difficult to remember/concentrate) so you won't forget what you want to tell them. If possible take a family member or friend with you for support.
The most important thing for you is to get a diagnosis and then you know what you are dealing with and will hopefully get some medical help. Good luck and let us know how things go xx
When I posted last night I never expected to receive replies as fast as this! Its very heart warming to think that people I have never met have taken time out of their lives to help and advise me, so thanks again for that!d37jpvxvnmgnc2.cloudfront.n... I am going to make an appointment today and I will definitely make a list of my symptoms, I'm finding myself more and more these days having to write things down as I cant remember, and if my GP says one more time "it's your age" I will scream! I'm 52 not 82 for goodness sake! It helps me to know that someone else thinks there is a possible connection between my symptoms and FM, I will let you know how I go on at my GP.
When I was your age nine years ago, I got "well, we're none of us getting any younger, are we?" from my GP! Took me until very recently to get a diagnosis. A diagnosis doesn't really take you any further forward, but I'm hoping that if ever there is any real treatment to be had on the NHS, I may be in line to be considered for it.
I totally agree with the above posts. Write it all down, or print off your post here to save yourself time. Hand it to the gp if you find it hard to articulate and take someone with you if you can. They tend to realise you're serious when you have company.
If the gp is reluctant to suggest it get that referral to the rheumy, which takes long enough as it is. The sooner the ball is rolling, the sooner you can start to deal with your medical problems.
You know that is what is so lovely about this site we are all in the same boat and we all care about each other and try with all our hearts to help one another. It is one of the best sites for fibromites and I for one could not live with out it. So pleased you have joined us hope it is good for you. Looking forward to more of your blogs whoops we call them posts now, just jump in with both feet and enjoy
NHS doctors know nothing about fibromyalgia for the most part. Most have not even heard about it. It could be that you have it . I Believe I have had it for the past 7-8 yrs but only recently came to this conclusion from a u tube video. About 2 weeks ago I started on a low oxa
There's many more things than just fibromyalgia NHS doctors know nothing about. In fact they excel in knowing very little about anything at all in my experience but telling you to 'come back in 2 weeks time if symptoms haven't gone away'. On that, they are EXPERT
I feel well and truly welcomed here, at a group for sufferers of Fibromyalgia, before I have even had a diagnosis! Thank you! I was actually beginning to feel as though no one cares, I think I have used up all my friends/family sympathy credits (not that I want any sympathy!) but I think they are just sick of hearing me moan and groan, as soon as it was established I didn't have a brain tumour( which I had investigations for in the beginning) I think they breathed a big sigh of relief and thought to themselves, "well, at least its nothing serious!" and left me to get on with it! I don't blame them, we all have our own lives and our own problems,don't we? It is fantastic to know that now, if I need to talk, or if I have something on my mind, I can come on here and there will be someone who will have a chat with me, that means a lot, so thanks again, I look forward to it!
Sorry my reply seems to keep going off before I have finished. Read about fibromyalgia on the web. Also about low oxalate diet which is said to help the condition
As a general rule NHS doctors know little or nothing about fibromyalgia. They are trained in drugs and operations for the most part. All problems start in the gut. As I say the low oxalate diet may help
Hello, Thank you for you're reply, I will have a look on the internet at the low oxalate diet you mentioned, and I will also pass this info on to my cousin who has had FM for the last 10yrs and struggles daily with her pain and fatigue.
Hope it works for you and your cousin. All the low oxalate sites say it is good for fibromyalgia.
Hi there Snickypoo
Welcome
I thoroughly agree with everything everyone else above has said.
In my experience there are very very few GP's that know anything at all about Fibro and probably just as many more who don't believe that it actually exists.
I only mention this because it's been my experience, and may possibly (but I hope not) be what you might come across at your Surgery.
I don't mean to be the bearer of bad news ~ in fact quite the opposite. I just want you to be prepared, so that you can put your foot down and insist that you get referred to a Rheumatologist.
We are all here for each other 100% and as we don't tend to get a lot of sleep you can usually find someone to chat to at any time of the night or day
Good luck at the doctors. Let us know how you get on.
I wont have to worry about getting my doctor to sit up and take notice of me, for today, at least, I can't get an appointment, well, I can, but, only with a doctor that I wouldn't trust with my bunions! So it looks like I will be able to sit/lie/lie/sit and worry about the sad state of my health for at least another 24hrs until I can try to run the gauntlet at the doctors surgery again tommorrow for an appointment!! Grrr!
Anyway, another ugly beast has risen its ugly head this morning, my forms have arrived, to change over from incapacity benefit to ESA and they look so ridiculous, the way they describe disability, is not how everyone is affected, I can't actually believe they are getting away with treating disabled people like this! Something else for me to worry about, I hardly sleep as it is, it's unlikely there will be much snoring happening in my bedroom with the worry of this on my mind now! Oh dear! Well, as my mum always said "there is always someone worse off than yourself" which I know to be true, doesn't stop me being a worry wort though sadly.
I might be taking you up on the offer of middle of the night chats..........please. x
Fibro myalgia you can look up on the web. Apersn that has fibroids which you can also research on web is called a Fibroid of smetimes a fibro. All the best
Uh oh, lol I've just found another meaning for fibro!!!
Fibro is another name for fibrous cement sheet and it's used as a building material. Apparently it used to be made out of asbestos but is now made from cellulose. But it's also an abbreviation for fibromyalgia so there ya go!
What souces would you like on those hats guys? Lol.
Here's another, more appropriate meaning for Fibro too:
'fibro' is a Latin word, meaning fibrous tissues such as tendons (tissue that .... This is an interesting article about Fibro and maybe the reason we get Fibro.
Sounds reasonable that. I read about that on the app I have and it seems there are a number of possible causes. Be interesting to see where the research finally takes us. Would love to find a cure.
Hello there, I apologise for my ignorance, but, I'm new to this and I am just starting to find out about fibromyalgia, could you possibly be so kind as to explain the difference between that and fibro for me, it might help me whilst trying to find out what is wrong with me?
urm! as I've commented above hunny, but if there is a difference then I'll have to eat my hat LOL
ā¢ in reply to
Of course! I must also state that the reference is to fibro being a different medical condition to fibromyalgia... Isn't it????? that was my take on it
Someone corrected me (see above) for calling Fibromyalgia Fibro.
To my understanding that's what we all call it.
I've asked the person who corrected me to explain what the difference is, but I'm still awaiting a reply.
Coz xx
Hiya
The forms are intentionally long and misleading so that the DWP hope that you will give up and stop claiming benefits.
I'm awaiting my Tribunal date and its worrying me sick. Not because I'm not genuine, but because of all the games the DWP play to mislead you.
You've come to a good place for advice on forms etc.
I'm still in the middle of my claim, so not a lot of good to you, but if you post a question or ask admin (message MDaisy), someone will be able to help you.
I love it when people tell me there's always someone worse off than me. That then makes me feel extra guilty for feeling sorry for myself!!
I've got to the stage where I tell my dr what is wrong and I want to see someone who can help me. It's my life and I want the best one I can have, all be it in pain. We only get one shot at it. I got so angry at my old dr just smiling at me and saying that's how you are now !!!
I have spent quite a bit of time on the web today trying to find the difference between fibro and fibromyalgia and I think I can more or less 99.9% guarantee there isn't any difference, nothing that can be found,not easily anyway, and I must also add, that I think it was very rude the way you were spoken to on here and it's a really sad that it upset you! I hope you are ok now though, you are obviously well thought of around here and I feel sure you would have been missed if you had stopped coming on here, I would have missed you and I've only known you a day!!
Thank you so much. I've had a bad anxiety attack over this and I can really do without it. All I wanted to do was try to give you some support and welcome you.
I'm really sorry to hear that you were so badly upset by that rude post, I hope you are feeling better now, you should know that you were successful in making me feel very welcome and I feel that I have got more support from you and the other members on this forum in the past 24 hrs, than I have from GPs, hospitals or anywhere else put together in the last 8 months, and I thank you once again for that!
Coz should we all like to use fibrous there is no reason why we should not. So please ignore the post saying we are all wrong were not . . Please keep coming . Don't give up for nothing xgins
Hi there snickypoo 'chuckle chuckle' how childish of me LOL
welcome hunny as you can see there are many peeps all ready to chat aswell as listen anytime There isn't really anything I can say as all who've typed before me have said it all.
I concur with gins, dee, ladytelita and coz its easier to say that LOL No offence intended to anyone else
Anyhoo! I'm the one that dishes out fluffies and fluffy cuddles for comfort they're really soft and come to order
Again, welcome xxxzebxxx big fluffy cuddles coming your way
Please feel free to chuckle at my name, I actually love that you have! Hehe! I have a tendency to be a little bit childish at times too, so I think we will get on just fine! I have used the name 'Snickypoo' on t'internet for years, its a nick name my Dad gave me when I was young, there was three of us, Snickypoo, Bumtaz and Snobbledobby! I think, out of the three, I got the better deal! Hehe!
I look forward to chatting with you and receiving some of your fluffy cuddles, you and everyone on here sound so lovely!X
Hi there it sounds like fibro and it took me over 40years for the docs to say its Defoe fibro with all 18points ,I have had it since 12years old and now 61 so don't despair .See if you can see pain clinic it was he who diagnosed me .x
Wow! 40 years! That is unbelievable! My cousin has had it for 10 years and it took her probably as long again before that fighting to get a diagnosis, but 40 yrs?! That is another level completely! How are you in yourself,I really hope your doctors have managed to get your symptoms to a level that you can cope with and life isn't too painful for you. x
yeah! I got diagnosed in march this year after having problems since in my teens, 20+ years and I thought that was epic! I found a lovely doc 5 1/2 years ago who vowed he wouldn't stop until we found out what was wrong with me, we not he, I researched and researched was testesd and scanned for many many things, we even discovered other health issues on route
Like you I was persistent because I was ill and needed recognition for that soooooo don't despair and keep your faith and stay positive whenever possible hun. When you find you can't then we're all here to help you through it
xxxzebxxx aw! you definitely need one of my fluffy cuddle recliners what colour would you like?
How sweet of you to ask well life is tough as you know with fibro alone I have many things wrong so its hard.I don't go to doctors if I can help it ,just tend to be ill on my own.I have a wonderful husband I'm blessed really .As I said I started with it when I was 12 now 61 so long time.Hope things improve for you, I was in a pit in my 30 s and it all improved emotionally when I accepted there was no cure and there would be lots I could not do. Its important to grieve because it is sad .take care sweetie and thanks for asking ,you are the first person to do that xx
Ahhhh bless you! I can understand why you wouldn't want to be going back and forth to the doctors, when you are in the amount of pain that FM causes the last thing you need is being poked and prodded by doctors especially as many years ago as you were suffering,the treatments weren't too successful were they? You obviously have a brilliant husband, you are lucky in that respect, I'm not married, but I have grown up kids that are very good with me, I will be lost when they fly the coup, but, I will cross that bridge when I come to it!
Snickypoo,I just find my doctor does not really care that much or seems to care ,I think it would be good if all doctors had just one year in our shoes get my drift .Although the pain clinic doctors are lovely .take care xx
Zeb,Im up for some ,anything that has chocolate in the title is good for me .x
Hello jessam, it is true that when we accept things that we can't do anything about then we stop wasting money on so called cures and settle down to doing the best we can .I was no different than anyone I tried to make me better spent thousands on it ,but my best times came when I just sat down with paper listed the things I could no longer do ,then I put down the things I could do .From that day on I was happier in myself. I'm not saying I had any relief but my mind was healed .I think a lot of us are struggling at the mo pain etc ,so to you all I wish you well xx
Hi, a little late in the day but welcome to this site, you have found as I have a place full of very understanding friends, no matter what time of day or night, someone will be on offer not only the best advice when it comes to Dr's and horrible forms but more important support you can't find anywhere else.
I have read through the posts and as I have only recently been told that I have fibromyalgia ( I was "lucky" as I only became ill with this 16 months ago and was told I had this by GP some 4 months later which was confirmed by rhemy guy some 6 months later ) before this I was completely healthy did not even take paracetamol and now I am on a handful of drugs including MST 40 mg twice aday and Oramorph when I need it.
You talk about weather or not your forgetfulness is part of the condition and the answer for me is yes. I have no short term menory, and I can't go out alone as the fibro fog means I quite offen don't know where I am or how to get home. It's not necessary to do with age, I am now the grand old age of 42, I can't remember things, can't walk more than a few metres, but I do have two of the best daughters anyone could have who now help care for me without compliant
Anyway as I said welcome, and I think the over welcoming answer is yes see your GP as we all think you have it
Thanks for the welcome! I can say in all honesty that this is one of the nicest places I have ever been on the internet, and when I think about the daily struggle that everyone on here has with their health issues,yet they have still found the time and energy to try and help and support me when I have needed it most, well, it has restored my faith in humanity I can tell you, I have had more support from the members on here in 24 hrs than I have had from all the medical people that have been dealing with me for the past 8 months!
Thank you for sharing your story with me, it is sobering when you realise that there are so many people out there suffering from this awful condition, after speaking to the members on here I know I need to see my GP again and insist on a referral to a rheumatologist, I think they will just leave me lying here if I don't force the issue! My first hurdle is to get past the receptionist to actually get an appointment!! Anyway thats my next step, I've been warned it's a lengthy process to get a diagnosis, but I think I just want the doctor to say "thats whats wrong with you" I need to know for my sanity, they keep telling me what I haven't got, now. I want to know what I have got!. Im sorry if this isnt making sense Im so tired and I cant thinl straight.
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xx
I believe my work is trying to encourage me to leave - I can't afford to - HELP!
What do I do with my GP who is ignoring my Fibromyalgia diagnosis and diagnosed me with CFS?
wits end 
continuously falling asleep...
