Fybromyalgia/CFS

[armanisgirl]

Hi all

Haven't been on for a while, so do apologise for neglecting you!

I'm having a bit of a bad time just now with my fibromyalgia, which means I'm in awful pain all day, every day, and extremely exhausted. Does anyone have this? If you do, what do you find helps with easing a flareup?

It's International Fibromyalgia Awareness Day on 12th May 2009, so if you do have FM, try to do something to help raise awareness - you can get packs from www.fibroaction.org (http://www.fibroaction.org) to put leaflets in libraries etc, or you could ask the radio to do an article on FM, whatever helps raise awareness. I've emailed GMTV asking them to do this, but no luck so far, while others have got in touch with Panorama etc, local papers etc.

If you have fibro, and feel you need someone who knows what you're going through, go to http://www.ukfibromyalgia.com/forums/index.php

Living in constant pain is sometimes crippling, can be isolating and is not fun! 1 in 50 people suffer from it, yet there is no cure for it and not that much is known about it. So far it's just theories about why people get it. Some doctors don't believe in it (just as they didn't believe in M.E!!!). And so many people don't know about it, have never heard of it and just can't understand it. It's not life threatening, but it can have a huge impact on a sufferer's life. Many people aren't even aware they have it - there is no blood test to check for it or scan or anything like that. I saw the 'stress' thread, and wondered how many people may have fibromyalgia undiagnosed, but whuch has been diagnosed as 'just stress'. 'Just stress' isn't 'just', the same as 'just' cannot be a prefix for ANY kind of illness.

[porshiepoo]

I was diagnosed with this a few years ago. It's probably secondary to the Narcolepsy and it can be quite debilitating alot of the time.
Because it doesn't have external symptoms that people can see, it's hard to get it accepted for the serious condition it is.

I don't find the docs too helpful either. The Rheumatologist that diagnosed couldn't suggest meds because he had no knowledge of my Narcolepsy meds and the local doctor appears to be under the impression that it's something you learn to live with.
The worst aspects of it are the fatigue. People think you just mean you're tired but that term doesn't even come close. Some days (especially if I've over done it the day before) I literally struggle to get out of the bed. My brain feels fogged and I feel brain dead as well as bodily dead.
Doesn't help depression either!
The pain when someone touches me in the wrong place is excruciating. Funnily enough before I was diagnosed I used to think it was my cellulite hurting, even though I didn't have any. lol.
If someone or something just catches a wrong area, I'll bruise and it'll feel like someone has hit me with a baseball bat.

I was glad to be diagnosed as I knew it wasn't just me being lazy, but it's a bitter sweet diagnosis as I cannot take anything for due to my Narcolepsy meds which have to take precident, so I am literally having to learn to manage it by myself.

Did you know there's an extremely fine line between Fibro and M.E? Many docs believe they are actually one and the same.

Perhaps a Fibro/ M.E/ CFS area on the org would be a good thing?
Many of us feel isolated and as if we're suffering alone but I know there are many on here who suffer one or the other - Paris is also definately a sufferer.
A place for us to go to support each other would be a great idea, maybe enough of us should request it from the Man in charge? I'm sure he's accomodate.

[crashbandicoot1979]

My mum was recently diagnosed with this (although it took a while for the dr's to finally realise what it was!). I don't know a massive amount about it but thanks for the links, I'll check them out. So far she's been prescribed steroids but has not looked at other treatments. Will follow this thread with interest as the whole situation is new to us and any advice I can pass on to her would be much appreciated.

[armanisgirl]

Just wanted to say thank you for the PMs :) and glad I mentioned this!

Porshiepoo, I don't know how you manage! I know fibro is bad enough without having something else that requires top priority. I find bruising the same - baseball bat analogy is spot on! My bruises are with me for weeks, sometimes months!

Crashbandicoot1979 - fibro tends to take a while to diagnose as there are so many other conditions that have similar or same symptoms, which is why doctors go through bottles and bottles of blood tests; to rule out any other cause. If your local GP surgery/rheumatologist/neurologist (they all deal with FM) doesn't appear to know much, some of the links have pages that can be downloaded for information to be passed on to the medical profession.

Just be aware though - many doctors/specialists have the same mindset as those who did when M.E was first diagnosed - it's not real, doesn't exist, all in the head, have some rest and you'll be fine, you're just depressed etc etc. Sadly, many conditions can be poo-pooed until more is known about them! Hence the International awareness day!

Good luck to all with fibro/M.E/CFS, and gentle cotton wool hugs to you all.

[crustyroll]

Some doctors don't believe in it (just as they didn't believe in M.E!!!). And so many people don't know about it, have never heard of it and just can't understand it. It's not life threatening, but it can have a huge impact on a sufferer's life.

Armanisgirl, I totally agree, because you look alright on the outside and there is nothing obvious that you hurt, people think you are making it up or just feeling sorry for yourself.

I was diagnosed about two years ago after suffering various aches and pains for years. It was partly my fault as I didn't push it hard enough with the doctor but I kept telling them that I felt pain in my body and they didn't really take any notice. It was only after talking to someone with Fibro that I realised I had so many things in common with her and that I felt and experienced similiar things to her. I then pushed the doctor into seeing a consultant and saw one at Caithness General. I have not seen a Rheumatologist as was advised by a locum that I would be wasting his time!

The list of symptoms is endless but the main complaint in sufferers is pain, tiredness and brain fog, sometimes its even hard to remember what day you are on (which we all get but imagine feeling that way almost every day). As I said to the doctor, by the time it hurts to stir a pan of mince, hold a hairdryer or brush your teeth, then something is going on. I am really struggling at the moment with my hands and arms and I have to stop and rest when brushing my teeth as all the muscles in my arm feel like they are burning, my arm feels like a dead weight and I have no strength at all.

Its not laziness either, I used to work five days a week, look after the kids, the house etc, now I'm lucky if I can do a couple of things in a day. Some days I feel quite fit and can hoover the downstairs and do washing, the next day all I can manage is to get myself up and dressed.

I've now been told that some of the pain I'm experiencing is because I'm excessively overweight and this will improve if I can loose weight. While I do agree that I'm overweight and to loose some will help my joints, I don't have an overweight head that causes the pain in my neck and shoulders :lol:

The doctors do have a hard time believing that you are in pain and that ordinary paracetemol is like taking smarties and that no matter how tired you are that you still can't sleep at night. I have to sleep during the day just to function normally, even if it's only for 30 minutes. I have stopped telling people that I have fibro as it's so difficult to explain and you can see the disbelief in some people's faces.

A local support group would be great as then we could pool our information together and hopefully help each other and then maybe the doctors will take a little more notice of us.

[Shabbychic]

This looks an interesting site (http://www.nervecentre.org.uk/Myalgic%20Encephalopathy%20%28ME%29.htm), aimed at folks in Caithness and North Sutherland.

I have ME/CFS, but at times I have strange aches and pains which I believe may be Fybromalgia related.

I have given up talking to most people about it, as they don't want to know. I was in hospital recently and found it really hard. Many of the nurses, believe it or not, had never even heard of ME, and I was just expected to get on with things like a normal patient.:~(

With regards a support group, I believe there is one in Caithness somewhere, but I'm afraid my ME is too severe to consider attending groups. An online support, forum type group would be best for me.

[crustyroll]

An online support, forum type group would be best for me.

This would be an excellent idea, it would accomodate all of us having a bad 'fibro' day and not being able to get out of the house :~(

Even though there are forums on the net it would be good to chat to local people as we all live in the same catchment area for health treatment. Without asking others we don't know what treatments are available or what meds help.

[porshiepoo]

I agree. A local support group would be a brilliant idea. Maybe one where we could attend but is also internet based for those who just can't?

My problem is that Depression makes it very difficult for me to interact with people face to face, the internet is a better option much of the time.

Doctors also need to be made more aware of this problem and others like it. It's not acceptable to say that it doesn't exist, it so obviously does and we have a right for it to be acknowledged and treated.
I do find medical treatment up here in the Highlands is quite poor. We have to travel so far just to get to see a specialist - my daughters have to go to Edinburgh regularly to see their specialists, the rheumatologist is in Inverness and I can apparently "forget" about my necessary appointments with a Neurologist. :confused I was supposed to see one every 6 months to make sure my Narcolepsy meds were correct and at the correct doseage (I was diagnosed in England) but I've managed to see him once in the 6 years I've been here. My meds were all to cock and the local doctor just claims he's not familiar with my medication! Great!!! You'd think a doctor would GET familiar if a patient of theirs is on it would you not?

I'd really like some help with the Fibro as the joint pain is unbelievable sometimes. Not so long ago my hip felt as though it was out its socket and I could do nothing but shuffle.

Do any of you other Fibro sufferers also get the Light and noise sensitivity? I hate that.
Or the cold hands and feet all the time? Or the numb limbs?

[Rie]

I have had M.E /CFS since i was 11 although this went undiagnosed for some years and i always thought the dr that i had to begin with thought i was attention seeking or time wasting,
I have more good times these days than bad thank goodness but at times it is a struggle,
Trying to explain to my new partner has been difficult as he worries so much and i am sure he doesnt understand properly but he does his best but when your head aches so bad and you arms legs hurt too much to move ,cant walk properly or speach becomes slurred he thinks an early night will cure it and seems concerned the next day when i am still the same , i am sure he will come to understand , i wish other people would rather than thinking i am just being lazy!

[porshiepoo]

I have had M.E /CFS since i was 11 although this went undiagnosed for some years and i always thought the dr that i had to begin with thought i was attention seeking or time wasting,
I have more good times these days than bad thank goodness but at times it is a struggle,
Trying to explain to my new partner has been difficult as he worries so much and i am sure he doesnt understand properly but he does his best but when your head aches so bad and you arms legs hurt too much to move ,cant walk properly or speach becomes slurred he thinks an early night will cure it and seems concerned the next day when i am still the same , i am sure he will come to understand , i wish other people would rather than thinking i am just being lazy!

That's one of the worst aspects of this condition. It takes an age to get diagnosed (up till that point you're made to feel as though it's in your head) and then finally once you are diagnosed it's almost impossible to get others to understand just how bad it is - you can't see physical symptoms so it's easy to just be blase about it.

I'm lucky as my OH does understand how bad it is and if there are days when I can't do anything he completely supports that and is helpful 100% of the time. If I'm having a good day and decide I'll get on with stuff that I've neglected, he'll always warn me if he thinks I'll suffer for it the next day.

Rie, you should try printing out an Info leaflet from the net and get other half to look at it, as well as family and friends - it may just help them to understand the condition a bit more and realise just how debilitating it can be.

[Bobinovich]

Perhaps a Fibro/ M.E/ CFS area on the org would be a good thing?

Good idea PP - why not set up a Social Group here? Just click Community in the blue bar above then click Social Groups which will list all current SGs. Scroll down and on the left hand side there is the option to create a New Group and take it from there.

Good luck.

[Shabbychic]

I have had M.E /CFS since i was 11 although this went undiagnosed for some years and i always thought the dr that i had to begin with thought i was attention seeking or time wasting,
I have more good times these days than bad thank goodness but at times it is a struggle,
Trying to explain to my new partner has been difficult as he worries so much and i am sure he doesnt understand properly but he does his best but when your head aches so bad and you arms legs hurt too much to move ,cant walk properly or speach becomes slurred he thinks an early night will cure it and seems concerned the next day when i am still the same , i am sure he will come to understand , i wish other people would rather than thinking i am just being lazy!


I found this video (http://www.youtube.com/watch?v=r0w9-eQ_fKQ) on youtube, which is very good at explaining ME/CFS. It is simple, yet effective. Let your partner watch it and he may understand a bit more. :)

[Liz]

I empathise with you all as although I don't actually have Fibromyalgia or ME (well at least I don't think I do) I do have a lot of the symptoms you all describe and it is really awful.
Especially when other folk don't understand and say you look well.:confused

It can make you feel very isolated especially when you have depression as well like Porshie. I tend to 'hide' behind my keyboard as well.

I am having one of the 'brain fog' days so hope this post makes sense.

[crustyroll]

My problem is that Depression makes it very difficult for me to interact with people face to face, the internet is a better option much of the time.

I'd really like some help with the Fibro as the joint pain is unbelievable sometimes. Not so long ago my hip felt as though it was out its socket and I could do nothing but shuffle.

Do any of you other Fibro sufferers also get the Light and noise sensitivity? I hate that. Or the cold hands and feet all the time? Or the numb limbs?

The depression is really hard to deal with, I find it one of the hardest parts of fibro. Pain is bad enough but if your mood is okay then you can deal with it, but when you feel like life isn't worth living or you can't take the pain anymore it's really hard for others to understand this.

Sometimes I am walking like I'm an old lady or I've got something stuck to me ...lol... even in bed the hip pain can be bad and you have turn over constantly in bed to try and get any relief.

I suffer as well from light and noise sensitivity, tinnitus too, I constantly get sore glands, sinus aches and pains in my face and jaw, sometimes my very teeth hurt and my skin aches. How do you explain to someone that touching your skin is sore when it looks perfectly fine? I've had numb limbs but tend to find I have more tingling sensations rather than numbness. Do you have restless legs at night?

Porshie, do you get pains in your calves, shins, fingers? I get sore joints but most of the pain feels like it's the tendons and muscles rather than the actual joint. I suffer from migraines, mood swings, 'women problems' extreme tiredness, endless broken sleep and then you have to add on that you can't cope with it all. Any stress seems to make it worse and usually I could deal with it easily but can't anymore and find it extremely difficult filling in forms. Facing people is hard, there are many days I don't want to speak to people and usually I can't keep my mouth shut!

It would be great to meet up with anyone locally if they feel up to it, just on an informal basis with no committment, as we all know we can't do committment very well due to having bad days. I will be offline for a few days but hopefully this thread will keep going for a while as I think there are more folk out there, like Liz, that have symptoms that have gone undiagnosed for years.

Hope you're feeling okay Liz?

[davlaurjen]

My brother has had fibromyalgia for some years now.You would hardly recognise him as the person he used to be.

[porshiepoo]

The depression is really hard to deal with, I find it one of the hardest parts of fibro. Pain is bad enough but if your mood is okay then you can deal with it, but when you feel like life isn't worth living or you can't take the pain anymore it's really hard for others to understand this.

Sometimes I am walking like I'm an old lady or I've got something stuck to me ...lol... even in bed the hip pain can be bad and you have turn over constantly in bed to try and get any relief.

I suffer as well from light and noise sensitivity, tinnitus too, I constantly get sore glands, sinus aches and pains in my face and jaw, sometimes my very teeth hurt and my skin aches. How do you explain to someone that touching your skin is sore when it looks perfectly fine? I've had numb limbs but tend to find I have more tingling sensations rather than numbness. Do you have restless legs at night?

Porshie, do you get pains in your calves, shins, fingers? I get sore joints but most of the pain feels like it's the tendons and muscles rather than the actual joint. I suffer from migraines, mood swings, 'women problems' extreme tiredness, endless broken sleep and then you have to add on that you can't cope with it all. Any stress seems to make it worse and usually I could deal with it easily but can't anymore and find it extremely difficult filling in forms. Facing people is hard, there are many days I don't want to speak to people and usually I can't keep my mouth shut!

It would be great to meet up with anyone locally if they feel up to it, just on an informal basis with no committment, as we all know we can't do committment very well due to having bad days. I will be offline for a few days but hopefully this thread will keep going for a while as I think there are more folk out there, like Liz, that have symptoms that have gone undiagnosed for years.

Hope you're feeling okay Liz?

Yes, I do get pain in my shins. I also get extreme pain in my hands but it's more like cramp and a shooting pain through my wrists. My hands will also lock into a claw like hand!The doctor mentioned Carpal Tunnel a few years ago but I ain't even going there - it is what it is.

It would be great to think we could meet up with other sufferers for Coffee but at the moment I don't like to go anywhere. Depression apparently makes a person become reclusive and to be honest I could quite easily run barbed wire around my land, lock the gates and never see anyone ever again.
My daughters have friends round all the time and it really upsets me. I know it sounds stupid and I don't let on to the girls (I just disappear lol) but it's the noise. Constant babbling and silly laughing - does my head in.

Apparantly it's the lack of deep, restorative sleep that can cause Fibro and unfortunately that's also a symptom of Narcolepsy. I fall asleep within seconds sometimes but I know I go into an immediate dream state (this should usually take at least an hour) and I wake several times every night resulting in several dream states meaning I don't get restorative sleep so I wake up feeling as though I've been hit by a bus.
My Narcolepsy meds are designed to stop sudden sleep attacks during the day - esentially they keep me awake - although I have to nap several times a day (usually I'll get some kind of warning that I have to sleep but I have to find somewhere immediately).
If I try to fight it, within 10 to 20 mins I'll sound and look like I'm drunk (apparantly this is sleep deprivation that a non sufferer would show after about 2 days of non sleep). Completely blinkin embarrassing! I also start with the automatic behaviour - my brain has shut down as such but I'll carry on doing what I was doing with bizarre consequences.

Crustyroll, does your depression make you think about death?
I constantly worry about the million and one ways that my family may come to harm over the course of the day. And once I have a 'what if that happened' scenario in my head I cannot stop it playing like a home movie. I'll see the death, the devastation, everything - then I'll panic and worry even more.

I believe CBT is supposed to be a good form of therapy?

[porshiepoo]

Okey Dokey I've started a support group but haven't a clue what we do now?

[Bobinovich]

Here's the Social Group page (http://forum.caithness.org/group.php?groupid=18) for other posters who wish to join. From this page you can see the members, join the group, post a discussion, reply to discussions etc. - just like a mini forum of its own.

I suggest starting a discussion with a link to this thread and welcoming anyone who wants to join!

[Shabbychic]

Okey Dokey I've started a support group but haven't a clue what we do now?

I've joined the group porchie. I'm not sure what you do either. Having had a look about in there, I think it just works similar to the main forum. You just click on "post new discussion" and start a thread. :D

It's like the blind leading the blind here, but we'll get there.;)

[armanisgirl]

I've joined the group porchie. I'm not sure what you do either. Having had a look about in there, I think it just works similar to the main forum. You just click on "post new discussion" and start a thread. :D

It's like the blind leading the blind here, but we'll get there.;)


Ok, I've started the chat :) but really need the character limits increased from 1000 to at least 4000, so I can post some helpful texts. Hoping you know how! lol xx

[Shabbychic]

Ok, I've started the chat :) but really need the character limits increased from 1000 to at least 4000, so I can post some helpful texts. Hoping you know how! lol xx

Sorry, had a look about and can't find anything to increase the character limits. Perhaps you could add your texts in 1000 character segments. :)

[Bobinovich]

Sorry AG - this may be an Admin option but it's not available to Mods.