Comments for Fal Fibro Friends

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Lost your phone number
by: lynne Neary

Hello Ali, I spoke to you a while ago and was wondering when the next meeting will be and where. I've been quite poorly for some months now and not able to do much. I would really appreciate talking to other Fibromyalgia sufferers as I have some pretty weird symptoms and would be interested to know if anyone else has similar things. These include a feeling as if the nerves in my body are moving all the time. Particularly bad squealing noises, constantly, in my head. I have iritis in my left eye and spondylitis in my neck. Also when I'm on the phone my eyes become very heavy and watery and I find it hard to keep them open, as if I'm going to pass out. It's started happening when I drive too. Sometimes I feel as if someone is pushing pins into my body in random places. All the best, Lynne xx

Anne: Hi Lynne,
Yes, those feelings of nerves moving all the time are quite frequent. Another description I have seen many times is "raw nerves". The squealing noises is called tinnitus and is a real pain. In fact a recent study showed that many fibromyalgia sufferers have a lower threshold for noise and they are more disturbed by noises (hyperacousia). These "higher feelings" can happen on all senses: skin, mucosa, hearing, sight, taste, smell. You?ll have to wait for Ali?s answer for her meetings dates.

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Fibro Help
by: Ali Rowe

Hi all.. I run a voluntary FM Support Organisation that is based in Falmouth, Cornwall.. I will happily put any FM peeps in touch with others in their area and also am available for support. I am a FM sufferer and also a carer for my hubby who has FM and ME (amongst others!!) so have lots of FM experience and a good listening ear :)

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Comment for Angela Miller
by: Kim

Hi Angela,

No, you're not alone! Many of us suffer like you do and we're battling to get relief and be counted! Fibro is real and those who do not take it seriously are missing the point. Hydrotherapy may help you. I did mine in sea-water and it had a wonderful effect. I don't know what pills you're taking but I found them not very helpful until I followed the advice in the ebook they have on this site "Fibromyalgia Care". I'm a bit older than you are and don't have kids at home anymore but the cooking bit did help me to carry on without spending time in the kitchen and it's safe!!! I can hardly bend over for a long time and that has been a relief. If you have crumbling discs, it may be a real pain to bend over? Hope this help. Come back to me anytime you wish. I'll keep an eye for you on this page!

Kim

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please help
by: angela miller

Hi, I am a 34 year old mum of four I have been ill for a couple of years. I have been diagnosed with fibromyalgia, along with arthritis and my discs in my lower back are crumbling!! I am all new to this and I have to say I have never heard of fibromyalgia till now. I am going to start hydrotherapy soon and have been told it will help. Is this true?? I am in constant pain in my hips, back, elbows, neck, feet, and legs. Gosh just about everywhere! I am currently taking around 26 tablets a day to try and manage the pain which is just crazy!! Does anyone know of something else that could help me manage my pain in different ways than medications?? I feel so low and it just feels like there is just not much point carrying on sometimes I am desperate to relieve some of this pain as with 4 children aged 8 , 5 , 4 and 2 it is a struggle just to do small things with them which makes me feel even worse just doing normal day to day things is a challenge in itself and I would just like to talk to someone in the same situation who has fm who I can talk to as I think some people do not take fm seriously and do not understand. I would appreciate any advice anyone could give me thank you xx

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My concerns....
by: Ali Rowe

As a support group leader and an advocate for all FM sufferers in Cornwall, UK I am very concerned with regards to the changes happening with-in our NHS.. Now that GP's are to be 'in charge' of the funding, does that then mean any FM peeps that do not have the support and understanding of their GP will now have a poor care plan???.. I am looking into this situation and will let everyone know my findings.... xx

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Hi James
by: Ali Rowe

Hi there James and Thank You so much for your comments... I do feel for you as to have so many illnesses wears you out with the constant fight to achieve some quality of life doesn't it.. I too have multiple problems... I have degenerative spondylosis of the spine and neck, a prolapsed disk in my spine, asthma, tendonitis just about everywhere etc... I am not able to take pain relief tablets because of allergies so I am now looking into alternative therapies.. In Cornwall there is a centre for MS sufferers called The Merlin Project but they also offer treatments to people with CFS, ME and FM.. I have been looking at the Oxygen Therapy that they offer.. It is intended to reduce the inflammation with-in the muscle tissue and give you more energy...It looks promising as a pain relief alternative.. Do you have anywhere near you that may have this option or a hydrotherapy pool??..Where do you live??.. I could maybe look at what is available for you..

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Support for James
by: Helen

Hi James
Since you've called for help, it seems you've been left as usual on your own.
I have been following the advice given by Dr Susan Wong in the Florence Nightingale Newsletter and after writing to her she has added some good indications about exercising. I already feel better and for the first time, I have not been left totally drained out with pain and fatigue as before when I was trying to exercise.
You may want to try.
We all love you
Helen

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Just to say hello
by: james wyatt

Hello Ali,
I just wanted to say hello and let you know that I am a 64 yr old who suffers with a very chronic fibro and is left to suffer all on my own. I have a long list of symptoms with severe tendonitis of the left foot, spinal bulge, chronic headaches, neck spasm, hip pain, arthritis nodules in the hands and feet, digestive tract problems, water works problems, under active thyroid (I have hormone replacement therapy). I also have very severe eye disease.
I have just had ten foot and spinal injections which have left me very poorly. My doctor tells me there is nothing he can do to help. I have sleep apnea and a very strange sleep pattern and do not know where to turn for help. If you were interested to know more please contact me. I live on my own, and am a very lonely man who sometimes just wants to give up.
Regards
James Wyatt

PS: Would my case be of help to your awareness campaign?

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Oh what next ????
by: Ali

Just when I thought I was doing OK, up pop's muscle spasms in my neck (ouch), arthritis of the lower back (ouch), muscle spasms of the lower back (ouch), a 'bulge' in the disk space in between two vertebrae of my spine (ouch ouch)and then to top it all today, a boring trip to the opticians turned into another nightmare!!!!... A referral to a specialist as my eye muscles are weak!!!....Ever wondered why you get up in the morning ha ha......

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Whiplash
by: Philippe

Sorry to hear about the whiplash.
Whiplash is a common trigger for fibromyalgia and is even the one given as an example for fibromyalgia following trauma. It is a real stress, especially on the cervical muscles that are so painful in fibro. Try to keep moving your neck from side to side (no lateral movements, no flexion-extension). Do it slowly about 10 times an hour. It must not be painful. Just stop when you feel it uncomfortable. And increase your magnesium intake (good muscle relaxant).
All the best

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Oh what next???
by: Ali Rowe

On Friday (26 Feb) I was hit from behind in my car, by an elderly lady driver whilst I was stationary at a junction... I had to go to hospital as my neck was hurting and I have whiplash with pain now in my lower back, left shoulder and my right leg. Does having a RTA make your FM worse by any chance cause oh boy, am I hurting and unable to sleep more than 2 hours at a time..?? Can anyone advise me about this as at the moment I feel YUK...We are having an Easter Eggstravaganza and Fun Dog Show on Saturday 27 march '10 so if anyone would like more info please contact me.... I'm looking forward to it...

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Can't Sleep Again..
by: Ali Rowe

It's 5.25am and yet again I'm having problems staying asleep.... I can go to sleep no trouble but am feeling every little twinge tonight.... Think this may be a flare up....My skin has been burning in places too.... Feel exhausted too.... But still my feet are freezing!!!...

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Nice to meet up
by: sarah

Thank you so much for inviting me and Matt around it was very nice to see you both as well. I can't wait till Monday?s meeting. I do get very excited about going to them. I can't wait till the jumble sale so we can help. I was thinking about doing a few things like getting a big jar fill it with sweets and getting people to say how many they think is in the jar. If they get it right they win the sweets, and fill another with marbles and again get people to see how many there are in there. If they are right they can win a £5.00 or I will look for something when I go shopping. Take care all and have a good weekend.

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Nice Evening
by: Ali Rowe

Thanks Sarah and Matt for coming round for a cuppa.... It's so nice to meet people with FM and make new friends... Mark and I will always be here for you both... Matt, I know how hard it is to care for someone and Sarah I know how hard it is to live with illness every day.... You are sooo lucky to have a caring partner, lovely kids and a great mum..... Respect to you both, young people starting out with a young family and you are always smiling (well, at least when we see you ha ha)... I'm going to spend the week-end getting ready for our meeting on Mon 8 Feb, doing paperwork, downloading info etc.....Then there's the Jumble Sale to organise, then the Easter Eggstravaganza (gud spellin ah!!) and Fun Dog Show..... I haven't got time to be tired but I am!!!!...Bye for now people and talk again soon xx

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Kid free weekend
by: sarah

Hello everyone. Well, this weekend I'm kid free! My mum has my 4 children once a month, and when my baby is around 15 months he will go stay with nan as well, my mum is so cool! She helps me out a lot. Having my 5th baby has tired me a lot as I'm feeding him myself and he's up every 1hr30 for a feed, so this weekend I'm going to paint my front room and hopefully the kitchen as well, and I have to sort out all my children's cupboards so I can donate all our unwanted things to the jumble sale and car-boot. Got to go now, take it easy all.. xx

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Oh what a day....
by: Ali Rowe

Hi all, sorry I haven't blogged for a while but my quest to get FMS in the public eye and Fal Fibro Friends takes up soooo much of my life at the moment.... Have been girlie shopping with my 2 daughters today who are in their 20's and I just can't keep up with them anymore.... Yet another thing that FM has taken from me..... Fal Fibro Friends have their 1st Fund-raising Event in 2 weeks - 13 Feb so wish us luck... We are also organising a Fun Dog Show and an Auction so it's really busy with us.... I'm starting to feel as if I'm achieving something now.... Well take care everyone and Thanks Sarah for your lovely words.... Love to all xxx

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A BIG THANK YOU ALI
by: sarah trengove

hi to you all i would just like to say a big thank you to ali,kymarni outfit is lovely,thank you very much xxxx.
well i have been to 2 meetings now and they are very interesting and helpfull,i think i have had fibromyalgia for around 6yrs,but now only taking meds for it,as this is only 1 of my illnesses my everyday life is very hard but i love everyday of it apart from when my body closes down,and at this time of year i think everyone like myself finds it very hard to get out of bed in the mornings,
so come on people with fibromyalgia please come and suport our FAL FIBRO FRIENDS.
hope you all have a great xmas and new year

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Fibro and me
by: Ali Rowe

Hi all... Am sorry that I've not blogged for a while but haven't been feeling too good... Have had a Sinus Infection that seems to have taken a good hold on me.... Fal Fibro Friends met on the 7 Dec but only a few members came... Maybe the weather or the time of year (or at least I hope so)...We are meeting on 21 Dec so hopefully more will attend... Am going to chill now as soooooooo tired at the moment.... If I don't get the time before Christmas - I would like to wish all FM people a very Merry Christmas x

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Sleep Deprivation
by: Ali Rowe

It's 5.40am and so far have only managed 3 hours sleep.... My huby doesn't want to sleep, he's turning nocturnal!!!!..... We've had a warm drink, listened to the radio, kept the room dark, read books, gone shopping (on net).... wot next????.... Fibro just isn't fun anymore, have been doing a lot of research for support group buddies to keep my mind active otherwise I fear depression.... Smile Ali, Tomorrow (Today) is a new day.... Nite Nite All xx

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Wow!
by: Philippe

Ali is a real squadron leader as would say her huby!
She even excites people from Burlington, NC.
Come on Jackie, create your own support group. You won't get the chocs but Ali and all of us will help you :-))

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Fal Fibro Friends 2nd Meeting
by: Ali

Fal Fibro Friends have now had their 2nd meeting and things are going really well...We have group discussions, break off into smaller groups for chats and this week I organised a Fun Fibro Quiz... The winner won a box of chocs!!... It was a light humored gesture that was aimed at building up relationships and also confidence.... I have enquiries from miles away about joining the group so we need more groups in the South West.... There is a desperate need for Fibro people to have support.... My next mission?????

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Nice to hear!
by: Jackie R

I have added this to my life but can't attend meetings to far for me to travel! lol! I must say it is nice to read others in the same situation, but I am willing to share my own experiences with you too and add my knowledge where app. Hope to hear more! I look forward to sharing and learning about what other countries have to say!

Burlington NC

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Fibro Fog
by: Ali Rowe

Hi all my new Fibro Friends.... Today I am considering a connection between bad weather and my fibro fog!!!!... I bought a newspaper this morning and now I can't find it!! Ooopps!... I'll just blame it on the weather... I hope everyone is OK today.... I am really interested in discovering how attitudes on FMS vary throughout the world so if anyone wants to email me with their country's views on this subject I would be very grateful.... Thanks all.

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Tendinitis
by: Ali Rowe

Fibro people... Does anyone else suffer from chronic Tendinitis just about everywhere in their body??... So far I have it in my wrists, elbows, knees,ankles and fingers.... Am now running out of areas to get it (I hope)....!! At least the sun is shinning today..

Fibro Wishes ALL xx

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Reality Hits Hard Today
by: Ali Rowe

Good evening every Fibromite out there... I had a reality check today... I thought that I would go out and do a Fund-raising car boot sale for Fal Fibro Friends but it was so hard... I came home totally exhausted, aching and very cold.... I guess my car boot days are numbered now.... Ouch, the truth does hurt...

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Fal Fibro Friends Contact Details
by:

As Group Leader or Squadron Leader as my husband lovingly refers to me as, I intend to do all I can to get Fibromyalgia out in the public eye here in Falmouth... Once I have achieved that I will move to taking on Cornwall, then who knows!!

This 'invisible' disease can be life changing and debilitating for sufferers and their families so why should be have to suffer in silence???

Best Wishes Fibro Buddies

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Fal Fibro Friends
by: Ali Rowe

We do not, as yet, have a set meeting place but this being looked into at the moment...

Fal Fibro Friends are desperately seeking financial help with the admin costs etc for our group so obviously if anyone would like to make a donation, I will happy accept it hee hee!!!!...Please email me at the above address for any information on how to make a donation to Fal Fibro Friends...

Today I am planning to arrange meetings with the GP practise managers here in Falmouth... One thing that was evident from our meeting is that sufferers here do not get enough support from their GP's and that indeed, GP's do not know enough about FMS to help their patients correctly, so enter Ali into the equation!... I will do ALL I can...

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Fibro Sufferers in Cornwall Need More Info
by: Philippe

Could you tell us where and when your having the next meeting? An email address/tel No for people who would like to join would be useful.
Your comments made it so attractive, you may get many more!

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This is what drives me on..
by: Ali Rowe

Yesterday, following the first meeting of my Fal Fibro Friends Support Group, I received 'Thank You' emails... I have achieved what I set out to do and that is to help others to understand this 'invisible' disease...Just to be able to relax in the company of fellow sufferers, not worrying if we mumble our words, forget what we were saying, have to go to the loo 6 times in an hour etc, was and will be such a relief (no pun intended!!)... FMS should be forced into the public eye, it is my intention to do this here in Cornwall, England...Thank you for your lovely comments, I will do this for us all who live with FMS daily...

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You're the first again
by: Philippe

First meeting yesterday and first on the site today.
Congratulations for your efforts and your enthusiasm! I am always amazed by the courage and bravery of people like you that can put on a fight when faced with this kind of disease. You give us the energy to carry on!
Philippe

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