Fibromalgia isn't all in my head!

Thanks Paul for sharing this.... says it all ...

Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from Fibromyalgia (thought they might have wished they could on really awful days!!) If you want to read articles or books about Fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called Fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don't want you to think I'm making this all up as I go along.

Bit Long But Thought I Would Share
Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Other times I may take a lot of medication and still won't feel any better. That's just the way it goes. I can't control how often I feel good or when I'm going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I've seen them too. Look at the list of side effects and the few symptoms they help in return. Even in the best studies those expensive compounds didn't help over half the people who tried them. No matter how happy the people in the pictures look, there's still no miracle drug available.

There's no cure for fibromyalgia and it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better -- I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel. Other times there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe. You may remember me as a light-hearted fun loving person -- and it hurts me that I am no longer what I was.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it's jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I've been beaten up or run over by a truck. Sometimes I feel too tired to lift up my arm.

Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I'm creaky and I'm klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don't seem to connect the way I should. Hand-eye, foot-eye coordination, it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall. When there's no railing to hold on to, it's terrifying.

Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I'm still liable to forget them. Don't worry, this is normal for Fibromyalgia. Most of us are frightened that we are getting Alzheimer's. New kinds of brain scans have actually documented differences in our brains.

I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don't know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that's really all right. I don't want or need you to give up doing what's important to you. That would only make me feel worse. Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I'll toss and turn and not be able to sleep at all. Every little thing will keep me awake. I'm sure that's confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm grateful. I can't always admit it at the time, but I'm admitting it now. One thing I can tell you is it won't help to tell me I'm irrational. I know I am, but I can't help it when it's happening.

Definition of Fibromyalgia

Definition of Fibromyalgia

( Thank you Linda for sharing this....)
A history of widespread pain. The patient must be experiencing pain or achiness, steady or intermittent, for at least 3 months. At times, the pain must have been present:

A. On both sides of the body
B. Both above and below the waist
C. In the Mid-body-for example, in the neck, midchest, midback, or headache.
D. Pain on at least eleven of the eighteen tender points

Problem with the definition is that it is a research definition and excludes many people with the syndrome.

Basic dysfunctions can be generalized to be characterized by:

•             Disordered sleep
•             Hormonal deficiencies (not picked up on standard blood tests)
•             Nutritional deficiencies
•             Infections
•             Mitochondrial dysfunction

Associated Conditions:

•             Chronic Sinusitis
•             Multiple Chemical Sensitivity (MCS)
•             Sensitive to medications
•             Allergies
•             Sensitivity to temperature or barometric changes
•             Intolerant to alcohol
•             Hypoglycemia
•             Dizziness
•             Low blood pressure
•             Low grade fevers
•             Heart palpitations
•             Frequent infections
•             Irritable Bowel Syndrome
•             Vulvadynia
•             Headaches (migraine and tension)
•             Depression
•             Autoimmune diseases (lupus, RA)
•             Restless Leg Syndrome
•             Weight Gain
•             Increased thirst
•             Low body temp
•             Insulin resistance
•              Yeast overgrowth
•             Carpal tunnel syndrome
•             Painful or irregular menstrual periods
•             Extreme exhaustion
•             Sleep disturbances
•             Brian fog
•             Shortness of breath
•             Confusion with numbers, names, words etc.
•             Mood swings
•             Numbness or tingling

Interestiing to anyone who may need to claim xx

Don't miss..........................
Britain on Benefits
Monday 18th Channel 4
20:00
Might be interesting to sufferers needing to claim x

This post is not about Fibro but very important to all - please read and share x

I didn't know about 112 did you?
Thank you Rosina for sharing this info.....

A bit of useful advice - verified by the Dorset Police.
The number does work from a mobile.

It was the Saturday before New Year and it was about 1.00pm in the afternoon, and Lauren was driving to visit a friend, when an UNMARKED police car pulled up behind her and put its lights on. Lauren's parents have 4 children and have always told them never to pull over for an unmarked car on the side of the road, but rather wait until they get to a service station, etc.
So Lauren remembered her parents' advice, and telephoned 112 from her mobile phone.
This connected her to the police dispatcher she told the dispatcher that there was an unmarked car with a flashing blue light behind her and that she would not pull over right away but wait until she was in a service station or busy area.
The dispatcher checked to see if there was a police car where she was and there wasn't and he told her to keep driving, remain calm and that he had back-up already on the way.
Ten minutes later 4 police cars surrounded her and the unmarked car behind her.
One policeman went to her side and the others surrounded the car behind.
They pulled the guy from the car and tackled him to the ground........the man was a convicted rapist and wanted for other crimes.
I never knew that bit of advice, but especially for a woman alone in a car, you do not have to pull over for an UNMARKED car.
Apparently police have to respect your right to keep going to a 'safe' place.
You obviously need to make some signals that you acknowledge them I.e., put on your hazard lights) or call 112 like Lauren did.
Too bad the mobile phone companies don't give you this little bit of wonderful information.
So now it's your turn to let your friends know about 112 (112 is an emergency number on your mobile that takes you straight to the police because 999 does not work if you have no signal).
This is good information that I did not know!

Please pass on to all your friends, especially any females.

As far as I am aware, 112 uses a system called triangulation so they can also pinpoint exactly where you are phoning from.

READ IT THEN PASS IT ON DON'T JUST DELETE - IMPORTANT

Urgent Please Read

CALLING PEOPLE WITH FIBROMYALGIA WE NEED YOUR HELP TO COMPLETE THE LARGEST GENETIC STUDY OF FIBROMYLAGIA EVER!
The study can be completed at your local GP practice!
We need to reach our target of 2000 people taking part in this study and we are 60% of the way there!  With YOUR help we will have enough people in the study to allow scientists to tease apart the genetic factors contributing to the development of fibromyalgia.
We have spoken to many people with fibromyalgia and have heard their frustration at the poor treatment options available to those living with chronic pain.  The team working on this study includes scientists and doctors convinced that we will be able to devise better therapies only with improved understanding of the biology of pain.
Thank you to the 1200 of you who have already enrolled in the fibromyalgia study – your support and effort is invaluable. If you have already received a blood donation kit we should be grateful if you would kindly arrange this by the end of April 2013.  If you have received a blood donation kit but are unable to take part in the study, please return the kit to FREEPOST address: Admin Team, Department of Twin Research, St Thomas’ Hospital, FREEPOST LON7776, London, SE1 7YY (no stamp required)
If you have fibromyalgia and would like more information about the study, please call us on 0207 188 1928.  On registration you will be sent a questionnaire, a blood donation kit and instructions. Or you can register on line at http://www.dtrsurvey.co.uk/fibrogene
If you have registered but have not yet received a blood donation kit, please bear with us as we continue to send kits out – the response has been most impressive. We will post the kit to you as soon as we can.
Thank you once again.
Best wishes
Dr Frances Williams
Senior Lecturer and Hon Consultant Rheumatologist
King’s College London
St Thomas’ Hospital
London SE1 7EH

I'm in

POSITIVE LIVING BY- GILLIAN ELLIS

We have now secured our first speaker to visit our group, Gillian Ellis will attend our group on March 12th and pump us full of positive vibes!
Gillian is Reiki master and has may other skills and techniques to share with us for  new positve ways forward.
Thank you Davina for introducing us.
Can't wait !!
Something to look forward to x

EXTRA SUPPORT FOR EVERYONE

Hi not sure about you but this cold weather is making me even more achy, isolated and fed up... everything is on the low spectrum this time of year... so i got thinking (even thats painful) although we have our group once per month its also good to have other support networks to keep us going...
So please if anyone knows or belongs to any FM support net works please feel free to share them with us here.
This one is fantastic and has a lot of followers and advice
Fibro Action press butterfly

NEXT GROUP MEETING

Hi just to let you know our next meeting will be on Tuesday Feb12th... same time same place !

HAPPY NEW YEAR

Welcome a new year and a new gadget... a Blog...Thanks to Linda my friend from USA we now have our very own blog... this amazing tool which if you subscribe to every time it is updated you will be sent the info via you e-mail... so a great way of keeping in contact.
Please give it a try

All Fibromyalgia sufferers welcome x