By Kimberly on Monday, June 05, 2000 - 04:45 pm:

Has anyone thought about death? I'm not talking about offing yourself. Just about not being in pain any more. When that time comes.

By Bianca on Monday, June 05, 2000 - 04:46 pm:

If I am honest, yes.
Sometimes I lay on my bed and have on one side the feeling that I cannot and above all don't want to stand this pain anymore and on the other side I feel like I am
only painssensible person, who is to faible to manage a small bit of pain.
But sometimes it is not really death, I wish, I think, but that something is changing. Sometimes I think that I would like to jump from the balcony- and if my leg is
broken then I know at least why I have this terrible pain.
As a nurse and from my experience I know that pain makes you feel very depressed, sometimes enough depressed to think about suicide. I had a very bad time.
After I changed the painkiller I had 10 relativly good days and I felt like my psyche felt more stable after 3 days.
But now pain is growing again and I feel some panik about.
I wish you all alot of force.

By Gwen on Monday, June 05, 2000 - 04:46 pm:

When I was younger I used to fear death but now I think a blissful nothingness would be wonderful. I don't think about actively topping myself but just wish that I'd
get wiped out on the road or maybe die in my sleep. I don't feel there is a great deal to look forward to and am terrified that I might end up as a resident in a granny
farm and left to vegetate. My husband has instructions that if ever I develop a terminal illness or start going gaga he is to fill me up with gin and sleeping pills, tie my
hands, put a plastic bag over my head and bugger off down the pub for a couple of hours.
I understand from an American nursing textbook that it is possible in the US to make what is known as a 'living will' stating that you do not want any heroic measures
performed to rescusitate you or to be kept alive by unnatural means or medication. As a firm believer in assisted suicide, euthanasia or whatever I think this is
somewhere we should all be able to exercise our choice.

By Tracy on Monday, June 05, 2000 - 04:46 pm:

Oh god Yes. Often. I go to funerals and I feel jealous that they get to die and I don't. Its hard to explain to people who aren't in pain all the time, but when you are
always being told that theres either nothing wrong with you, or that theres nothing to help you, that you are going to be getting worse for the rest of your life, you
don't really mind if it doesnt last that long.

By Iggie on Monday, June 05, 2000 - 04:47 pm:

Right now it would be lovely to be in no pain. I have just had to sit another exam on my Masters course. Even with extra time, a pad to lean on and a comfortable
chair, the neuralgia in my arm and the pain in my back, shoulders and neck is sore bigtime!

I am really glad I have found this page as I am so frustrated trying to explain to people that I may look healthy, but I live with pain and exhaustion every moment.

By Susan on Monday, June 05, 2000 - 04:47 pm:

I agree! I too am very happy that I have discovered this page. I live in Wisconsin (United States). I was recently diagnosed with HS, and it was relief to have a name
for my source of pain. But that is it. People look at you and since you are up and moving around, think all is ok. I am not looking for sympathy, but some sincere
empathy would be nice. I am going to a doctor that is treating me with a technique called reconstructive therapy, and it has been giving me some relief. He is also
having me take a few supplements. I only have had 7 treatments so far. And as some areas get relief, it seems pain develops in other areas. It is hard to answer the
question "how are you?" Do you lie and say fine. Or what? It is really a challenge to keep on keepin' on some days...

By Kimberly on Monday, June 05, 2000 - 04:47 pm:

I found this website two weeks ago and have been dealing with this pain "in my head for 8 years".
It has also been a blessing for me as well. Finally hearing from people in similar situations.
I hope your day gets better.
Kimberly

By Jonathan B on Monday, June 05, 2000 - 04:48 pm:

To be honest I have far too much to do in the allotted time I have this time around to wish it away,I think everybody has thoughts like this at some time in their lives
and I'm all for freedom of choice(living wills etc)
But I think well I'm here for --- amount of time so make the most of it whatever life throws at me.
I spent a while being depressed about what I couldn't do anymore(I was 23 when HMS really kicked in)but in the end I figured it was a waste of valuable time that I
could be doing something constructive with.
I am working hard at my personal goals and if I can achieve them thats a bonus,if not I'll do something else instead, blessings J

By Kimberly on Monday, June 05, 2000 - 04:48 pm:

I only think about death/painless days when the pain gets too unbearable. Most days I can think of better things to think about. Like beautiful spring days, and how
great it is to be alive.
LOL
Kimberly

By mary mansfield on Thursday, July 20, 2000 - 11:28 pm:

It is such a relief to have found you guys. I was diagnosed with hyper-mobile joints when I was ten. Now at almost twenty- one I have had two surgeries and countless PT sessions. I have recently lost two jobs due to hip and low back pain. My depression has also hit an all time low. PT for my back resulted in damage to my hip and a loss of the ability to walk. My doctor doesn't seem to have a clue how to help. I told my best friend that on a scale of 1 to 10 my pain was a constant 7. He could not understand because I hide it so well in public. I am so glad to find others who uderstand.

By wendy on Sunday, October 01, 2000 - 07:22 pm:

hi all , I am new here in the last few days, but wanted to add my thought on this thread also.
After pain for almost 2 years, too many tests to recall, way to much medication that doesnt work, 2 hospital stays , Yes I have at times thought of death and no pain, just close my eyes and go to sleep, then I feel bad for thinking that way , cause I would give others pain then and I hate to hurt anyone, plus I have a beautiful new granddaughter thats 10 months old now and she fought for her life when she was born as a primie under 3 lbs, She is the lite of my life she smile and cuddle make me stop thinking of death and tryinh harder to find out why I hurt so bad, I am not sure if I am hypermobile anyplace like most here are but I do have SIJD , OA in knees and hips and si joints and neck and very bad muscle spasms that wake me from a sound sleep ,
I keep thinking there is hope to be pain free sumtime soon and thats what we all need to hold on to!
smile and think good thoughts! and we will all make it!
HUGZ:) Wendy

By Elle Elàn on Sunday, November 12, 2000 - 12:05 pm:

When I was about 22 I had my knee oparated upon because of a dance-accident. The pt at the time told me that I had to quit dancing - I practiced 6-8 hours a day,(I'm a singer) - otherwise I would be in a wheelchair by the time I was 35.Since I was doing Janet Jackson-like repertoire this was very VERY hard on me.But I changed my style into swing/jazz and in spite of some heavy depressions I survived.I cheated a little by doing some tapdance within my shows and being very carefull and my own boss I maneged.
Then came this show. I was 31. I had a bad fall in the theater dressingroom at dressrehearsel.Naturaly I did do the two shows that were planned there. After that I was in big trouble. I now was officially diagnosed hms and in spite of the fact that I gave up dancing I still will be in a wheelchair eventualy and already am every now and then.I felt like I gave up my life over nothing! It really hurt to think what I could have accomplished if I had kept on dancing. Even if it only would have been for a few years!
What kept me going and still does is the thought that I wouldn't have met my husband if it wasn't for the careerchange to jazz.and most of all the thought that my daughter still needs me. I'm 34 now and have to think about literally every move I make. My daughter is nearly 8 now. And there's a lot I can NOT do with her (rollerskating,running,skipping rope or even brushing her dolls hair etc) But I still have a lot I can and must do with her.I am her MOTHER and therefore I have the obligation to just be there for her! To raise her well,to teach her. THAT'S what keeps me going when I can't do anything but lie down in pain. Up till now both she and my husband are very supportive.My fear lies in the time ahead when I loose my battle and really can't do anything anymore; for I don't want to be a burden to ANYONE as I often feel I am, aspecially on daytrips.To everyone:FIND THAT ONE LITTLE POSITIVE ITEM AND MAKE IT BIG, even the smallest,most rediculest positive thing can turn into a handle to hold on to life!Try not to think of the help YOU need but of what you can mean to someone else!However insignificant it may seem to you: it might not be so to another person!

By Patty on Tuesday, November 14, 2000 - 05:48 pm:

I was in significant pain all the time - frequently used a cane to walk in the mall although if I leaned on it too heavily my wrist and shoulder would start to holler more. I was a regular at the chiro for my spine, but especially my SI and neck. Then I discovered a myotherapist. She trained four years in the US and then worked under an Aussie chiro for several years. What a change! I haven't been back to the chiro! I am now seldom needing Tramal. My lovely cane is parked, no longer kept in the trunk of the car. My SI is still my greatest pain point, but she works on it faithfully and it continues to improve. My therapist is very sympathetic - she has HMS and was immobile for 15 years before going to a myotherapist. She had been told all those things we all hear - "It's in your head" "You are just looking for disability pay so you don'e have to work", etc. It took one year of what started as excruciating therapy for her to be fully mobile, but now she rides her own motorcycle, works, teaches, etc. She has pain and gets therapy herself, but she functions. She now laughs and says she had 15 years in pain school so she can better serve her clients. I wish you all had someone like this to help you.

By Elle Elàn on Tuesday, November 14, 2000 - 10:29 pm:

Hi Patty
What is myotherapy?

By Patty on Wednesday, November 15, 2000 - 10:00 pm:

Glad to answer that. Myotherapy - myo means muscle so it is a deep tissue massage designed to release the knots in your muscles. I think it works because we work our muscles overtime to hold everything in place and the "toxins" (the leftover garbage from the fuel used by the muscles) get trapped. We get little pockets of the stuff and they cause pain so we tighten up more. The therapist finds those little pockets with her fingers and applies pressure on them for 5 -7 seconds. "Hurts so good" while it is happening, but then the original pain is less. Sometimes I can feel the "popping" of those pockets as she massages. One thing the therapist has to be careful of is going too deep on us. Our skin and tissues are softer and our tolerance of pain is higher than other people. I also take a pain killer before I go.
Ask you chiro if he/she can refer you to someone - then you will get a good one and insurance sometimes pays for some of it. Also, be sure to educate them. I didn't think I had skin involvment until I started therapy. Now I know!
I failed to mention that my therapist was suicidal before she had myotherapy. Her children were all that stopped her.

By Shelley on Friday, November 17, 2000 - 08:15 pm:

Patty,
Thank you for your explanation of myotherapy and why it is needed. I have had the small knots in my muscles that hurt so bad for a few years , after a car accident . I hate to be touched or massaged in those areas. I have been to a dozen docters and finally in the last 3 months diagnosed with HMS and fibromyagia.I was not given much info on how to live with it, just to join a wellness center with hot water therapy and exersize carefully but on a regular basis. This myotherapy sounds like it could help me , how often should you do it? Does cold weather make it worse? It seems to cause me more pain.
Shelley

By Patty on Monday, November 20, 2000 - 10:27 pm:

Dear Sheena, I posted a reply yesterday and it didn't get on. Sorry about that.
I get my therapy about once a week unless I am really in trouble. When you release all those knots or bubbles of waste product it has to get out of the body. It goes into the elimination systems, so you need to drink LOTS of water to carry it out as fast as possible. I find that sometimes we actually feel sick for anywhere from a few hours to a day. Don't get discouraged, just know that it is part of the process of getting rid of the pain.
There is a new product available in the US that you add to bath water and soak in. I have read letters from several people w/ FMS that have found real help. Cell Wellness Restorer was developed by the same MD who invented the TENS. Unfortunately it is only available from AIM, a direct sales company.
I do find that cold weather, air con, rain, etc affect my pain. However, my son finds that dry sets his off. I have about decided it has to do with where you were raised. To leave that climate seems to make a difference.
I wish you a pain-free day.

By Patty on Monday, November 20, 2000 - 10:37 pm:

Hi Shelley, wrote a reply yesterday and for some reason I am having a problem posting.
I usually get my therapy once a week, but if I need more or the therapist thinks I do I'll go for two.
After the therapy we sometimes feel sick for a few hours to a day. That is because the little pockets of waste products have been released into the body all at once and are circulating through the body systems. You will need to drink LOTS of water to help eliminate them as fast as possible. Don't get discouraged, but know that it is part of the process of getting rid of some of the pain.
A hot soak is nearly always wonderful. There may be a new product on the market that will help with FMS. It sounds pretty promising. I won't name it until I get some more info and maybe try it myself. I don't want to recommend a phoney product.
I think cold does make a difference. I also find wet does. I live in the tropics and find the air con in the car will sometimes do me in.
I wish you a pain-free day, Shelley.

By Patty on Monday, November 20, 2000 - 10:39 pm:

What do you know! It did post! Maybe it is my computer. Well, you now know that I have not tried the Cell Wellnes Restorer. If anyone tries it, pls let the rest of us know if it works for you!

By Jane on Tuesday, November 21, 2000 - 02:44 pm:

Cold air definitely aggravates my hms, I think because i'm always walking around tense and hunched over in the wind. I've been going to an unusual masseuse for a long time, and he's the first to make any dent in the consistent pain and muscle tension -- he does just what you describe, pushing on a specific location until suddenly the muscle all around it loosens. Does that sound like myotherapy? I definitely have to drink a lot of water afterwards, my head is always swimming. What have you heard about this Cell Wellness Restorer? What is it?

By Patty on Saturday, November 25, 2000 - 12:38 am:

It sure does sound like myotherapy. Has your masseuse ever mentioned that your skin feels different from other peoples? That is when I first realized my skin was different. I never thought I had skin involvment!
What I've read about Cell Wellness Restorer is that it is a bath soak that seems to be absorbed through the skin in the warm water. It is purported to raise the magnesium and DHEA levels in the body safely. It isn't well understood even by the inventor, but it is being pushed by Dr. Shealy, the founder of the American Holistic Medical Association. He is from Duke University School of Medicine. He runs a chronic pain center and developed the TENS machine. Pretty good credentials to me! I've read about several people with chronic pain who have found rapid and solid relief with it. If you want the name of a distributer in your area, write aimonline@aimintl.com I personally can't wait to get to the US again so I can try it.