re: Fibromyalgia/ME

RE: re: Fibromyalgia/ME

greetings sundance[sm=wave.gif]

i just wanted to say hi!

i have lived with fibromyalgia for 17 years, and the first 2 years was hell on earth because fibromyalgia wasnt understood. i under went so may push me! pull you tests! i wanted to give up.

i also have other disabilites (artiritus, cva, ptsd,cervical spondylosis, conversion disorder) that i live with which took many months to be understood because fibromyalgia plays tricks with not only our bodies but our minds. we are looked at as time wasters, or may be we like being ill??

a doctor once told me i would of been better off if i had lost a limb or eye as then everyone could see what was wrong. he was right!!!!!!

it is a daily battle not to allow it to rule my life and believe me i wont give into it.

i wish you the strength you need to live your life with happiness

take care and enjoy every day!!!!!

kismet

[sm=hidesbehindsofa.gif] dont let fibromyalgia keep you from living and loving your life!!!!!!

RE: re: Fibromyalgia/ME

just to say i have had fantastic results from vrt reflexology, i have been pain and fatige almost free after 3 treatments and as i had fibro for years i can hardly believe the results myself

RE: re: Fibromyalgia/ME

Reflexology has certainly helped me too Soar. I still get aches after physical activities although much improved. but my energy levels are much better.

Jan x

RE: re: Fibromyalgia/ME

Hi
everyone this is my first post so be gentle. I too suffer from FBM, and over the first few years they consired MS, after that I felt as thought I was a time waster or I was imagining the pain etc. I too have found refex great and also meditation and Reiki and I am more or less living a full life but still taking care of my self as I find if I get overtired or stressed my pain rises untill I have to rest and its not worth going through the pain

RE: re: Fibromyalgia/ME

Now is this is going to sound odd.... it's GREAT to hear of someone suffering fibromyalgia!!! Seriously, thanks for posting message. I've suffered for years. I was one of the guinea pigs back in the early 90's when they were trying to make sense of this condition. It's really hampered my life, but now, late in life, I'm just getting the grips with it. It's all about lifestyle, don't you think?
I haven't had the courage to work for years because I know what happens when I do. I did, however, have the courage to go back into education and am just trying to complete my MA.

I suffered fatigue syndrome for years, but managed to get it under control by diet and supplements. I swear by Q10. I always likened it to being suddenly switched off... as if someone just pulled my plug and I would dissolve like a heap. Horrible!

One thing re pain of fibro... my doctor recommended that I try chiropracty last year and it worked very well. Much of the searing pain is now under control and I only have to contend with a sort of really bad ache.

Good to meet you, fellow sufferer. I haven't had much support from people over this... all deciding over the years that there's nothing wrong with me. I started believing it myself at one point, but have overcome that little illusion! I came to the conclusion a few years ago that those unwilling to support me don't belong in my life.

I'd be interested to hear how this has affected you socially.

Chris

RE: re: Fibromyalgia/ME

Have any of you considered spiritual healing and reiki, I know someone has already mentioned reiki. The energy field that surrounds us, when in balance we have lots of energy, when it's unbalanced our energy levels drop.

Healing works on the energy bodies to correct imbalance and increase the life force that surrounds us, distributing it to the energy centres found around the body.

Love
Rosi x

RE: re: Fibromyalgia/ME

Have you looked into Time Line Therapytm and Hypnosis - let me know if you would like to know more and if I can be of assistance in anyway 😉

RE: re: Fibromyalgia/ME

Both Fibromyalgia, and MEhave really distressing symptoms. Like many therapists here on the site I have worked with lots of folk with this diagnosis hanging round their neck. It falls into the somatising catagory.Over the years I have begun to wonder if these are some sort of body "burn out" problem. The system just going into mischevious non co-operation. I had a mild form of ME about30 years ago as a PT student, can recall a lot of SLEEPING, falling asleep in pubs, falling asleep in clinic, so tired I couldn't walk across the road. Even now if I get tired, I get pains, but I attribute it to my "1 take on too much personality". I've often come across folk who have food intolerances, hypersensitivity. I believe meditation and self healing hypnosis work is great for the subconscious. NLP is cool for clearing emotional stuff and clearing trauma. Best is just relaxing, and being really positive. Good luck
Jill

RE: re: Fibromyalgia/ME

Im sure I have ME but im scared to go to the docs and get diagnoised (if id be taken seriously) because of how it would affect my career even though I realise its stupid not to because I just cant cope with life and my job and im so so so so so tired all of the time!!! Im in denial I suppose. what help is offered from the Nhs. Would anyone like to share their experiences?

RE: re: Fibromyalgia/ME

Hi, I'm new to this site but I am very interested in what is being said here.
I was diagnosed with Fibro about 3 years ago and I'm having trouble trying to make my husband understand what is happening to me. Have others had this problem?
He is a 'fixer' and he can't fix me and sometimes I cannot do what I did just yesterday, today. He can't understand it.
I know he's concerned but he isn't showing that concern very well. He makes fun of me (tho' I'm sure he has no idea how much this hurts) especially when I'm in Fibro Fog or if I'm all stiff like I am in the a.m.... or anytime that I've had a long time sleeping or sitting in one place for a long time.
I was interested in the comments about food being a possible problem causing fibro and it made me think about what I have been eating for years... especially all the sugars in my diet. I'm planning on cutting back on that as much as possible.
I also have a thyroid problem handled these days by pills and the irritable bowel that seems to go hand in hand with the fibro.
Right now I'm in a very low period in that I've had to quit a group I very much enjoyed but was unable to guarantee my time for working, which is part of this group. Now I feel like I have no friends left as I never hear from any of the ones I used to have a lot to do with and I've stopped calling as I'm beginning to feel like a total nuisance.
Have you experienced this problem?
I'm very glad to have found this site as I really have no one to talk to about this.
TEMA

RE: re: Fibromyalgia/ME

I have my offical work head on reading these posts (I work in a Social Security Office - now renamed Jobcentre Plus offices) so would just like to say I hope you have all claimed Disability Living Allowance. As with all benefits you cannot generalise however I have found that those clients who have Fibromyalgiashould qualify, remember to complete the form describing how you feel on your WORST day. If you have mobility problems DLA is sometimes paid even if you still work. If you are on a low income and not getting Income Support you may also qualify for Health Benefits to cover prescription charges - ask for form HC1. Contact your local Jobcentre or Citizens Advice Bureau - CAB are very good at helping you complete the forms if necessary.
Best wishes
Should have added this only applies in the UK

RE: re: Fibromyalgia/ME

Thank you for the advice solas!

RE: re: Fibromyalgia/ME

Hi Everybody, I mislaid my password and haven't been able to get back in to the forum for a while.

Firstly, Lunawomb, self-diagnosis is a dangerous game. I've known several people who were convinced they had fibromyalgia, only to find out that it was either nothing at all or something else. Of course, this isn't to say that you don't have FM, but wouldn't you like to know for sure? Personally, I believe the stress and worry of thinking something awful has befallen one is, 9 times out of 10, far worse than the actuality. FM is a difficult condition, but it is NOT the end of the world.

TEMA, as a VERY long term sufferer of FM, I can absolutely guarantee that one of the major contributing factors to us feeling worse is STRESS. I too had people around me who simply could not (some would not even try) to understand what was going on with my body. The situation was making me much worse. After a very long time I managed to eliminate the stress (in my case by eliminating the people concerned) and concentrated on getting myself as well as I could possibly be. No junk food (and sugar is junk), no alcahol, no preservatives, plenty of water, no caffeine. You get the picture. I honestly thought I could never live like this, but it's become second nature and I could never return to my old ways.

Perhaps your husband needs to read all these postings to begin understanding that he cannot fix this.

There is good news, however.Now trust my on this people,when I first had FM I thought I would never, ever again enjoy my life.Yesterday the sun was shining and I took my camera out into the countryside and walked for two and a half hours solid, came home, cooked a meal from scratch and still had energy to spare. The fatigue is much, much less now and even when it does return, it doesn't last as long.I'm thinking of returning to some sort of work. Now I know I am not cured.... FM is managed, not cured, and unfortunately I believe that each of us has to find our own management package... we are all so different.

To all my fellow sufferers.... persevere, BELIEVE that things will improve and that the answers are inside you somewhere. I was once told by a great South African doctor that all the medical profession can do fo me is offer support and somehelp with the symptoms.... I had to find out why my body was reacting, or what was it reacting to. That was the best bit of advice I've had.

Now, I'm not married, so I don't have your dilemma which must be very, very frustrating. For my part, and this is merely the way I deal with my life, I know that I must put my health first or I would be in a very bad way.... After a lot of searching I have a couple of good friends who are very supportive. If they weren't, they would not be friends any longer. I know it sounds harsh, but needs must.

You will find your way, I know you will. See this as a journey, not an illness.

Keep the faith.

Love
Chrisx

p.s. sorry it's so long-winded. I've been reading all the posting, unable to log on and contribute.

RE: re: Fibromyalgia/ME

Thank you, Chris, for replying to my dilemma... I know there is no cure - heck, they don't even know what causes it and so far my dr (who is a wonderful guy) has done his best for me but as you say - nothing great happned from that.
I've begun to realize that I have to do something about it myself. I don't drink alcohol but it seems sugar is my downfall. I just discovered how much sugar is really in my diet so I'm trying to eliminate it. That's step one.
I found it interesting that you mentioned drinking lots of water... I think everyone should do that but do you think it is particularly important when you suffer from FM?
For me, Fibro means feeling not quite myself most of the time, a little achy, nauseated, a little foggy etc. until the BIG bout hits and then I'm in hospital - wham! Just like that I can't walk, stand or do anything for myself.
The shots I got the last time I was there did nothing for the pain until the third shot the next morning. That helped enough for me to be able to have x-rays. Of course, the x-rays showed nothing... but at least, no one suggested the abject pain I was in was all in my head. 😉
I keep as active as I can but these days that usually means I ride my bike.
Hubby and I have had a talk - one of many - this morning. He says he never knows with me and that he's always waitng for the other shoe to drop. He has epilepsy, himself, so I told him I know what he's talking about... LOL!
Anyway, I figure, as long as we can talk - we'll get thru.
Take care,
TEMA

RE: re: Fibromyalgia/ME

TEMA, I ache for you, my love. I so well remember what it was like in the early years of my own journey with FM. It seems so hopeless when one is on that merry-go-round of bad days and really bad days until hospital looms. I remember being pumped full of pain relief, including gold injections, to no avail.

The way I approached it was that there was something, or a combination of things which were attacking my body. It doesn't seem to be a virus or a bacterial infection or anything more sinister, it's just that something either internal or externally introduced is stopping my body functioning properly. I can control the externally introduced stuff by the food I eat... that, at least, I am in control of. And yes, water is very important, it flushes out toxins.The dreaded sugar is next.(Ialso have a sweet tooth). I don't eat refined sugar. However, if I fall off the wagon a buy a doughnut or chocolate bar (hey, we're all human!), I notice within minutes the foggyness returning.
Ieat a lot of fruit now, and as an alternative to sweets I carry dried fruit with me to dip into.Dates and apricots are particular favourites.

For myself, animal fat is another culprit, especially red meat (I don't have any ideological reasons for not eating red meat), so now I stick to chicken, fish and vegetarian dishes.But even with chicken,I don't eat it more than once or twice a week at most.

Have you tried Co-enzyme Q10?

Chris x

RE: re: Fibromyalgia/ME

Just reading with interest this post!

Just wondering if any of you who suffer from FM could help?? As a newly qualified therapist (massage. Indian head & reflex to name a couple) im interested to know which if any holistic treatment helped to ease your symptons? I have had someone enquire about a full body massage to help with muscular aches/pains and knots in certain areas, and I have treated another girl with IHM which she found benifical. But not used Reflex.

so have any of you had either Indian Head or Body massage or Reflexology treatments and what did you think of them?? or any other holistic treatments you may of had!

Cheers guys x

RE: re: Fibromyalgia/ME

Hi MB

If you look back at the earlier posts on this thread, your questions will be answered :).

Reflex is great for FBM as is massage, but the pressure should be adapted to suit the client. Acupressure is very effective, can be combined with the massage. using direct digital pressure on the 'sore points' can help relieve the pain.

Jan xx

RE: re: Fibromyalgia/ME

Hi, I've recently been diagnosed with Fibromyalgia and to be honest dont know much about it. I have found a few websites and read everyones comments here but still dont really know what to do about it.

When I read other peoples symptoms they make mine seem very minor. I dont have searing pain, I have achy bits that come and go, I feel stiff, sore and generally old!!! I dont have chronic fatigue, I just get tired sometimes. I had glandular fever two years ago and know what chronic fatigue feels like and thankfully I'm not like that anymore. I do suffer with waking up feeling more tired than when I went to sleep and several other of the symptoms my doc mentioned.

I have regular reflexology and have done for years. I eat a good diet with lots of fruit and veg. I drink lots of water. I exercise (well usually I do but Ive got a gammy knee at the mo!) One thing I do wrong is I drink a bit too much.

All the Doc offered me were pain killers and some type of tranquilisers to help me sleep....no thanks!

If any of you lovely people know of any more helpful websites or have any words of wisdom it would be very much appreciated. To all of you who are suffering with it so much more than me, you have my admiration for all being so cheerful and positive.

RE: re: Fibromyalgia/ME

Hi Jan, thanks for that - wasnt sure if one treatment had been more useful or 'better' than another - but i think its a case of personal preference..

Runestone - even tho you say you think your symptons seem minor compared to everyone elses im sure they are still just as relevant. Hope you find something that helps you very soon hun! Wish I had something positive to say or a great link for you but I dont! have a hug instead! [sm=hug.gif]

RE: re: Fibromyalgia/ME

Hi Runestone, I'm so pleased that your experience with FM is less severe, but it is no less relevant. The only suggestion I have for sleeping is Valerian Plus herbal tea. It helps with getting a deeper nights sleep and thus not waking quite so drained. Good luck!

Cx

RE: re: Fibromyalgia/ME

Thanks Chris, I will try that! Sleeping is even worse in this hot weather, perhaps the whole country should be drinking the tea!

RE: re: Fibromyalgia/ME

Hi all
I would like those of you who have posted your improved condition to mention this to your GPs when you next see them.
Sitting face to face with your GPgives you the chancenone of us therapists will ever get = 5 minsfor them to listen to someone (who they may have known for many years before the problems ever started) telling them thereare treatments thatoffer reductions in pain and a chance tocopewith life effectively.

Anything that reduces thedemands on your GPmust surely be welcomed = reduced need for pain killers, less Gps home visits, less days confined to bed ect.
How many sufferers just like you does your GP see each year?????
Scientific proofaltenative therapyworks may never be offered to your GP or even believed by your GP,but ifenough of you keep telling them it does work then who knows !.

Regards Steve

RE: re: Fibromyalgia/ME

I'm new here so please be gentle!
I've had fibro for years and more or less have it under control-wise with regular acupuncture - the first time I went the practitioner could not believe the amount of sore spots!! I think he nearly ran out of needles! Now if the pain starts to get bad I go back but sadly, because of cost, I have to be quite desperate before going.
Certainly I can relate to the idea of having a leg amputated instead - people really can't understand why I am unable to do much when I look so well (apart from looking "rather tired"{!} sometimes.

RE: re: Fibromyalgia/ME

my man is very understanding of my pain but it took two years for him to fully understand! he even reminds me when im aboutto over-do-it. many days he has dressed me, helped me shuffle down the stairs and reaasures me that he doesnt think im a hypercondriac -which is my fear (not being belived)! its hard for others to understand when they've never been debilitated with the overwhelming pain that racks throughtheir body!

i decided to actually go and see a doc after 5 years of trying to manage it without any support or diagnoses. Today im having blood tests done for to eliminate things like anemia and diabetes that also cause fatigue. so im going to have to explain how difficult my life has been for the past years and i dont even know how to begin or what to say-especially since i'm particularly bad at the moment and have been in bed for a week with the exhaustion and pain. Sometimes i cant get the words together in a sentence. i have little faith in doctors after hearing lots of negative stories about fellow sufferers not being taken seriously.

I would like to hear about other peoples experiences of tests done for diagnoses etc, im really scared!

love L.Womb

RE: re: Fibromyalgia/ME

I take valerian night time sleeping pills with lemon balm extract and hops-they are magic! they are natural and dont make you feel bad in the morning. Ive taken them when ive been really ill with the pain though but they arent so good then and making my movement more difficult-but on the better days/nights they send me off into a beautiful relaxing sleep.

they are excellent for curbing night time anxiety!

i will have to look for the tea!- but need to be carful i dont end up completely sedated! lol

RE: re: Fibromyalgia/ME

"Right now I'm in a very low period in that I've had to quit a group I very much enjoyed but was unable to guarantee my time for working, which is part of this group. Now I feel like I have no friends left as I never hear from any of the ones I used to have a lot to do with and I've stopped calling as I'm beginning to feel like a total nuisance.
Have you experienced this problem?
I'm very glad to have found this site as I really have no one to talk to about this."
TEMA

I completely know what you mean-even the best of friends can tell us how we are starting to sound like a broken record- and get frustrated when we wont go places and do things without compaining about aches and pains like a 90 year old granny.

I dont really have a social life anymore and can only cope working a couple of hours a day, i cut out the un-helpful people in my life and focused on my true friends who all understand me now and expect a good whinge now and again on the worst days.;)

Basically the true friends will continue to support you!