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diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
How did this happen....so many new problems in such a short time,,,,,, in last 6 months jaw facial eye pain and headaches 24/7......hard to talk and eat and now my gums are suddenly all sore and swollen from being fine.

Now i need the dentist and last time i went I came home with this problem that has also become permanent. It's like i cant be touched or do anything without a new problem taking hold.

I had a time in bed a lot a while ago and now my right side of neck shoulder blade upper and arm is superglued together. Weeks of trying stretching but no it's definitely stuck like it.

My hands were safe now they hurt after minutes of use.....the list goes on.

Anyone else have permanent jaw pain to that degree?

Goodness knows what will happen when i go to the dentist and heaven forbid i need any treatment as luckily i haven't need any for 6 years and i didn't have jaw pain then....the good old days!

DESPAIR!.....and now my arm kills just typing this...tears not far away.
 
Oh Wiilow, I'm so sorry to hear you are having a bad bout. I get facial pain in jaw and sinuses too. Maybe it's good you are going to dentist as you may have an underlying problem that is exacerbating your FMS. What about heat or ice packs? I sometimes ask my partner for a face and head massage as that seems to loosen things up and get the blood flowing. Hard to do for yourself if your hands are bad. I have that problem too. Sometimes just pressing on sore spots for a few minutes helps and doesn't hurt my hands so much. Here's wishing you relief soon. Gentle hug.
 
Willow I am sorry you are having to cope with so many troubles all at once. I think Getemgirl has good ideas - I just wanted to add that if it is painful to type or use the computer there are alternatives that can help. I use voice recognition software, a touch pad mouse and a "lightio" keyboard that I don't actually have to touch to use. Without these aids, I don't think I could do much of anything on the computer.

I hope better days come soon!
 
Oh thanks DK i haven't heard of a lightio keyboard or voice recognition. Thank you both i really am struggling..it means a lot.

Giving in is so hard and i don't feel like me in anyway sitting around waching tv or reading. I wiped just 2 small cupboard doors in the kitchen today and my arm/hand kills. Can't type anymore. Oh no is this really it! Months the same.
 
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Hi Willow,
I'm sorry that you are in so much pain. I think I understand how you're feeling. I blew it with getting Disability checks. I was so depressed and was in that mood of not wanting to admit that I am disabled so I kept blowing off making an appeal until I had a really bad flare up. But by then it was past the deadline for appeals. I called a lawyer and they're trying to help me but I got a second denial. Evidently, bc I didn't make enough money in the last two years, I don't have enough Social Security Credits. wth? I haven't been able to work for the last two years so ....?
I was having two good days each week but this has been the week from Hades. Every day I have a new swollen body part. Does anyone know what causes swollen body parts like hands, wrists, lower arm, feet ankles, calves, rib, jaw joints. Have to stop typing bc my arm and hand are getting puffy again.
We all just hang in there :)
 
Thanks Cheryl Ann...i am in the UK and our disability system is also very hard to go through and get these days. I don't know about swollen parts. We all seem quite different in what we experience and where...whether it moves a lot or stays more fixed in places etc. I wish you well....and hope you go back to your good days soon. Maybe if it is something completely new you could get it checked but i know/think health care is not free in the US like here.
 
Lightio is a brand name for the keyboard - if you google "lightio + keyboard" you can find the website and see how it works.

Another possibility is to use a laptop - the keyboards on laptops have a much softer feel.

Voice recognition software can take dictation when you are writing something a bit longer. You can also use it to control the computer. For example if I have the voice recognition software on and say "start word" the computer will open a new document in Word.

If you have a Windows computer, you already have basic voice recognition available that you can try out. You can click on the start button, open the control panel and click on accessibility. There are tutorials to help you get started, all you need is a microphone. It takes a little practice to get used to it. If you decide it helps you, you might eventually want to buy something like Dragon Naturallyspeaking

Sorry... I'm going to digress into a bit of a story here - I promise it relates to voice recognition in the end ;)

I have produced and presented a report every week at work for the last 12 years. Before fibromyalgia it took me 15 to 20 minutes. I was diagnosed with fibromyalgia last May because of a monster flare up that left me almost completely unable to function. I was so upset and scared at home I asked my mom to drive me to work. My boss could see how bad off I was. He gave me a goal to just try to get that report done by the end of the week. He didn't really care about the report, he was just trying to help me get back in the groove.

It was really tiring and frustrating to learn to use voice recognition to do something that had been effortless such a short time ago. But it was also really empowering. Every time I figured out how to do something by speaking instead of typing I was taking part of my life and my abilities back from fibromyalgia. Finding these accessibility tools for the computer and learning to use them really helped me cope with my diagnosis.

Now that I've gotten used to it, I can prepare that report in 20 to 30 minutes.

Anyway, I'm sharing in case any of this might br helpful. I am thinking of you and rooting for you.
 
Thank you very much for all that info DK engineer...i also have trouble speaking because my jaw is is tight and painful these last few months.I feel locked in my own body and now my head and speech too.I hope for better times and the info you have given me is so kind.SUDDENLY I FEEL OLD. 6 months ago i felt young....looked young, took care of myself, am slim and was fun and positive...even with fibro for years....now i am in my pyjamas most of the time as they are soft and comfy..

I feel a failure because, everything i try i fail walking,,except around house....all things with hands arms...now speaking...laughing hurts...so conversation is hard work.....i am so pleased you feel you have claimed bits of yourself back!

That is what others don't understand....fibro robs you and is frightening ....you don't know what's going to happen or when it changes minute by minute at times.

It was when i learned what i could and couldn't do and had that sense of achievement when i could do a physical task and recover even if i ended up hurting doing it that gave me enough of me to cope.

So I knew who the new me was...and with ups and downs ...still feeling the weight of it and mentally measuring everything i was doing ....working out when to stop when all you want to do is carry on gardening...or cleaning singing along to the radio....i knew to stop have a cup of tea...then watching tv or read...use lap top or something restful..

Other days my partner would drive us out for lunch and a walk round somewhere nice in the countryside...a garden center or occasionally some shops on a quiet day. Maybe i could walk for 40 minutes to an hour max....on a really good day back to the car and drive somewhere else.

I would make the most of every minute...and like all of you end up aching and sooooo tired...but that was OK>>>i got used to it and counted my blessings.

But as i have bored you to death with now is so different..that me seems gone and a knew awful me that is like an alien has locked me in this body and thrown away the key and all my coping skills with it!

I am keen to know how any of you cope sitting and walking day to day especially if you are at work. Are your arms and legs and back etc badly affected or not to bad?ie pain and aching ...but usable rather than unbearable and rigid so that it feels like a bad injury everywhere before you even do anything.
 
I put a pot on the other day, but never saw it displayed. Since both Willow and DK_Engineer are on this post, I have a question. The two of you seem to have so much experience...

I read the other day about a cure for FM out of Tel Aviv University and Rice University. Hyperbaric chamber 90 minutes/day 5 days/week for two months. The high oxygen concentration is used for healing other things like cancer surgery. This was new research from June of this year.

Have you heard about it? It is supposed to cure not reduce symptoms of FM.
 
Hi Getemgirl. I haven't heard of it but will google later.

It's worth finding out about anything that can help.

Truthfully I don't think there is a cure for fibro as my personal belief (can only say for myself and my experience of how it crept up on me) is that it is the HPA axis in the brain that has gone wrong caused by being constantly bombarded with major stress and upset.

I think personality plays a big part here...I am very sensitive, have a very clear deep emotional recall kind of memory and remember things word for word decades later with kind of images that represent anything i remember good and bad.

It's great if you want to remember what year a song was in the charts 30 years ago but not so good if things go wrong and they seem to leave an imprint
that impact upon your future responses to events.

I wish i was tougher or more of a dreamy type or a man ha ha as they cant remember what happened yesterday!


I also think we are genetically predisposed (my dad mas chronic fatigue i think an uncle may have had it as he was always in pain but the doctors got fed up with him and wrote him off as depressed and my grandmother had rheumatism (the old name for fibro many moons ago).

My fibro started after my partner left me for a woman at work about 10 years ago and was distant and pretty horrid as it all came out and a few years of other stresses one after the other with little support except my own will and self confidence and health!

We had no contact...he didn't care about me at all and i was dumped. I got on with my life and kept busy. I had my health then!

Months later he contacted me to say he had made a terrible mistake and we got back together and i did something i never thought i would or could do.

I forgave him ...and we really started to live a good life and traveled abroad in our sports car (no chance of that kind of fun now) and as our children were adults were kind of madly in love again and had time to focus on each other.

Sadly i am the most sensitive of people and he was still working with this woman although he assured me it was a huge mistake and that he had no feelings for her.

I started to have panicky reactions if he was late coming home or if his mobile went off or even if he wore something that i knew he had bought to wear to take her out. I didn't know this was going to happen and i noticed that i would get adrenaline pumping more and more frequently and take longer and longer to subside.

Not panic attacks an extreme feeling like super hypervigilence and adrenaline that no matter what i did to distract myself just carried on. I acted normal but i could feel it pumping and would stay awake at night unable to reset myself. I didn't want to take medication and we worked together to find ways to overcome this kind of PTSD reaction.

It would catch me unawares in random places ie; if we passed the restaurant where i knew they had declared feelings for each other or if i went to his house i would get flashbacks of how cold and harsh he was to me when i confronted him with what i thought might be going on and where he had told me all the details...that yes my intuition was right and dumped me!

After months of wondering, suspicion, and stress i was devastated.

But we talked and gave things another go and were really happy again but each time this adrenaline thing happened i started to get vibrating in my legs and feet and by morning i would have aching weak legs.

That sensation then spread to my upper body and around same time I slipped off my back door step and broke my foot.

After that full blown fibro spread over most of my body in the following months.

As i have bored you all with i had another big emotional stress a while ago and the vibrating sensation spread again with burning pain for hours and where ever that goes i am in big trouble....it has a mind of its own.

I think the central nervous system mechanism in the brain gets over worked until it can no longer reset properly and causes all our systems to go wrong.

Maybe for others the start is not so clear or an illness brings it on. I could feel it happen if that makes sense.

Sorry to ramble ...
 
This is a two part post... The discussion branched and I want to follow both streams :)

Willow, you have been through so much! You are an extraordinary lady.

I believe that long term stress started my fibromyalgia as well. My case it was not as personal as yours - it was a combination of political attacks at work and a friendship that was becoming more and more toxic. I couldn't walk away from either situation so I spent years with that hyperalert feeling you describe. With a combination of hard work most of the problems at work have been brought back down to a manageable level. The toxic friendship kept getting worse, especially after I got fibromyalgia. In July my husband and I finally walked away from it. It is hard for me to stop ruminating about it though. I think it will take a while before I feel safe again.

To answer your question about sitting and walking, I don't do well if I spend too long in one position or if I walk too much. For example, after sitting at a picnic table for about an hour I had sharp, intense pains in my hips, thighs and back. When I got up to move around I was stiff and in a lot of pain. I tried walking to loosen up. The first 100 feet or so was really hard because of sharp shooting pains and stiffness. I kept going and gradually loosened up. At work I try to alternate between moving around and sitting. Luckily my job involves some periods of walking around production areas and some periods of working at my computer. I hope this answers your question

Getemgirl, I have seen articles about hyperbaric oxygen treatment (HBO) for fibromyalgia but I had not seen the claim it was a cure. After reading your post, I looked at it more closely. It sounds like HBO cures fibromyalgia that was triggered by traumatic brain injury. Fibromyalgia from other causes needs maintenance treatments. As far as I can tell, they are still testing on a small scale (30 or so patients at a time). The researchers think HBO increases neuroplasticity and allows the brain to heal itself.

This is really interesting to me because of a different small scale study I read about recently. These reseachers were studying the exercise Intolerance aspect of fibromyalgia. They were able to measure blood flow and oxygen saturation to and from a particular muscle group while the test subject was exercising. What they found was different is that the oxygen saturation in the blood returning from the muscle group was much higher in the fibromyalgia patients.

This implies that something is preventing the oxygen in the blood from moving to where it is needed. That is why heavy exertion is nearly impossible with fibromyalgia. It could also explain some of the pain. When the muscles don't have enough oxygen they switch to anaerobic energy production, which produces a lot of free radicals that can cause damage. Even a healthy person can only do anaerobic activity for so long before they need to rest and recover. During recovery, oxygen moves into the muscle and neutralizes the free radicals.

The researchers also measured the recovery period by monitoring. It took twice as long for the fibromyalgia patients to recover, which also implies that the oxygen cannot transfer from the blood to the muscles efficiently.

In my mind this explains why we have to keep moving. We need to keep our circulation high to get enough oxygen into our tissues.

Maybe that is why hyperbaric oxygen treatment is effective - the high pressure oxygen would give the bofy a chance to recover from chronic low level oxygen deprivation.
 
Willow, like you I've always been very sensitive. As an adult I help and protect those too young to do so themselves (I'm an educator.) I grew up the youngest of 4 and our oldest brother was quite a terror. As adults we have overcome his bullying and I've confronted him about this, publicly, on a few occasions. So I don't think that was my trigger all by itself. When I was 16 I was raped and had a couple of years of severe depression and suicidal thoughts. I don't think this was the single trigger either, although I think I started having IBS symptoms at this time. I think the trigger was a toxic work environment. I had done so well as principal of the school I had been assigned to, they moved me to a toxic school. This was when I started to get anxiety attacks and electrics shocks in the back of my neck. After 3 years I asked to be transferred to another school where I had many old colleagues and thought I could heal. After starting this job I was told by many employees that the current principal was mismanaging the school. My protector instincts kicked in and I started the battle to have him removed. It was a very rough year even though I had all the support I could ask for. By March I had my first full-fledged FM attack but couldn't get into a rheumatologist for a few more months (this was after making the appointment 10 months earlier due to hand pain.) so here I am today. In a good work environment with a new administration and wondering how much longer I can hold out before I will have to go on disability.

I have a second appointment with rheumatologist in less than two weeks. I'll be talking to her about meds other than Naproxen. This concerns me as the side effects are either not appealing or sound like they may disrupt my IBS.

DK_Engineer, this is the study I read about. I think I would be willing to try it even if I had to have maintenance. After reading the limited effectiveness of the meds we can choose from and their side effects, it's an option I am very interested in. Seems more "natural" and actually healing to the pain center of the brain than meds to mask the pain.

Here's wishing everyone a pain free week, or at least not as bad :) !
 
Gosh Getemgirl DK engineer you have been through lots too. The bits I said are only parts of my life story and like you both there is lots more and we all have our own personal stories.

The bits i have written are only the tip of the iceberg! I used to be an assistant Bank Manager. and after my ex husband also went off with a girl he met travelling abroad lecturing i fought to keep our beautiful home that we worked so hard so that i could raise my son in the home he was familiar with and keep him at the same school. I thought we were really happy ...we were affectionate all the time...building a home in a lovely area.....had good jobs ...then bam he tells me out of the blue he doesn't love me the same and leaves 2 days later leaving me and my young son in shock and lost.

So there were court hearings and barristers...all sooo stressful when they decide the outcome.

Anyway thats enough...I could write a book as there is more. I have some great bits to my life but like so many some tough times....but fibro for me is the worst and i wish i hadn't wasted time and so much emotion on other things when fibro was waiting around the corner!

Sorry if i have gone on too much..I am new and get carried away....apologies
 
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Somehow the stress/depression/anxiety from life seems to mess up the pain center of our brain. My parents always said not to worry about things I couldn't change, but I guess I'm glutton for punishment. I just wonder how that stress can change how our brains function. If we can break it we must be able to fix it.
 
HI getemgirl ....I can't sleep it's 3 am in the UK. I think its to do with over activity in the amygalda that stores our bad feelings and anxieties. This messes up the HPA axis... which from memory is the limbic system...this controls most of our bodily functions. there s a guy called Ashokk GUPTA who believes the amygalda can be retrained and that this is the key to curing Fibro CFS/ME.
 
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