By Margareth on Friday, November 30, 2001 - 11:32 am:

As good as it gets...

Saw that movie again yesterday, it made me wonder...

'What if this IS as good as it gets?'

I am in so much pain today I can barely hear myself think.

Please someone tell me it can get better...

I don't need to hear about painkillers (tried most of them), I most certainly do not want to hear about prolo (can't get it overhere). No miracle cures please. Been there, done that. I have had my share of physical rehab aswell. And here I am today.

I just need someone to tell me they feel better now than they did two, five of ten years ago. That they have improved for no particular reason at any time in their lives. Can anyone do that for me, or is this really as good as it gets?

By Beth Fairfield (Beth) on Friday, November 30, 2001 - 08:17 pm:

When you get an answer I will be waiting to read it. I have done nothing but go down hill since I was born(or so it seems).

Hugs
Beth

By Margareth on Saturday, December 29, 2001 - 02:52 pm:

Well Beth, it seems as if this really is as good as it gets... Come on, people, is there not a single soul out there who can tell me it doesn't have to be this way.
Give me some idle hope to cling to...

By Becky on Sunday, January 27, 2002 - 02:35 am:

unfortunately i can only echo what Beth has said. i first experienced pain from Hypermobility Syndrome 3 years ago, in only my ankles - now it has spread through to ALL of my joints gradually, and since i'm only 15 i'm sure that this will only continue to get worse.

but please dont let it get you down. a friend once said to me that only when you start to let it get to you will it beat you... stay positive and you will win. hard as it may seem keep your chin up, i think there is so much truth in what he said........ try and stay happy :-)

By Silvia on Wednesday, January 30, 2002 - 07:03 am:

Margareth,

From reading your message above I believe that you probably need some spiritual uplifting. One thing that has helped me deal with the depression and anxiety is turning to God. I get daily devotionals from a website that is dedicated to people who live with chronic pain or illness. These devotionals have helped me tremendously on a daily basis. The website is
http://www.restministries.org

They also sell books and some are written by people who are dealing with chronic illness and pain. Reading self help books has helped me look at life in a different angle. One that has helped me is

"Peace, love, and healing" by Dr. Bernie Siegel. He believes in the power of our minds and attitudes and also recommends meditation. I bought one of his meditation tapes and it has really helped me ease down when I feel anxious, stressed, or depressed.

I bought his book and tape at http://www.amazon.com, you can read the reviews on it at that site to find out what others think about it.

Hope this helps and feel free to e-mail me if you want to.

Silvia
silns@hotmail.com

By Margareth on Wednesday, January 30, 2002 - 03:24 pm:

Silvia, Thank you for your concern. I am not a religious person, not in a Christian way, so I can't find the kind of relief you found in God. I do appreciate your suggestion and I am glad your fate has helped you to cope with your problems.
Personally I feel much better now than when I posted the 'as good as it gets'-message. Part of it is due to another type of medication, part of it to a karate-class in which I learned a great deal about my inner and outer strenght but most of it is due to me finding the love of my life, the person I will marry one day.

Perhaps this, and your reply too, answers the question. Physically this might be as good as it gets, but life can always get much better!

By Margareth on Wednesday, January 30, 2002 - 03:29 pm:

I wrote 'fate' I meant 'faith', sorry... I am not a native-speaker.

By Silvia on Friday, February 01, 2002 - 06:31 am:

Margaret,

I'm glad that you are doing much better and that you believe that life can always get much better, despite physical ailments.

And even though you're not a religious person. Just know that God is real and he's always here for us. He has blessed me in many ways and he continues to give me strength on a daily basis. I don't mean to push religion on you. Only you can make that decision, but I just want you to know that he is here for us :-)

By Anita on Saturday, May 18, 2002 - 05:11 am:

Dear all,
Just a quick note to what is being said about faith. You do not need to be a believer in any particular type of organised religion in order to have faith. Sometimes the pain of our condition gets worse when we lose faith in ourselves to handle the situation. I've only recently come to this realisation and am looking into ways to deal with that depressed state that stops me handling that which I will never be without (this condition that we all share). First and foremost, finding this site has given me an immense boost. When the medical profession mock me, without prompting you all write about what I am experiencing. We are all simply human and no matter how strong nobody has an endless pain threshold. It will get on top of us from time to time. I am about to start combining meditation, aromatherapy and physio to see if the combination can provide me with relief where drugs haven't (I seem to metabolise painkillers very quickly). If I have any luck as I work through alternative therapies I'll report back and let you know the results. The difficulty is that we all need to find our own way and what works for one of us isn't necessarily the best option for another.

You're allowed to get depressed once in a while, and having a good cry is great therapy - trust me, I've tried it!!!

Love
Anita.

By friendly lurker on Sunday, May 19, 2002 - 01:40 pm:

Margareth,

Yes. Yes. Yes. I am much improved from when I was diagnosed, which was about two years ago.

I am quite hypermobile but don't have EDS. Tests indicate that something is wrong with my connective tissues, but we don't know what it is. I was in pain for several years before anyone checked me for hypermobility, and once diagnosed, I didn't get any help -- no meds, no advice, nothing -- until my back went into spasm and I couldn't really walk.

PT has been very helpful for me. Aside from the benefits to my back, PT is validating: my physical therapist told me that my joints wobble all over the place when I walk, so no wonder I'm in pain and exhausted all the time. That alone is a relief: someone understands! She's a former gymnast, too, so she also understands my desire to stretch and my sadness at having to stop the stretching routine I'd been doing daily for most of my life (the stretching gave me short-term pain relief but made things worse in the long run). But the result of all of this is that I'm in less pain than I've been in for years.

I know that everyone's case is different and that my situation is milder than most and that I'll probably always be in some amount of pain. But yes, yes, yes: life can get better.

(And word. My respect to religious/faith-having people, but I'm not one either. I have enough trouble believing in me.)

peace.

By Margareth on Tuesday, May 21, 2002 - 01:49 pm:

Thank you friendly lurker! I'll keep your story in mind. Nothing is certain. Maybe I will get better too. Maybe I won't. Who knows. Who cares. Some time ago my partner all of a sudden decided to start believing there is going to be a cure for hypermobility one day. At first I thought this was absurd and I wasn't very happy about this 'once-they-find-the-cure-thing'. But hey, why not? Why can't I believe there is going to be a cure?
I hereby proclaim: There is going to be a cure for HMS/EDS. It might not be soon, it might not be during my lifetime but there WILL be a cure.

And I volunteer to donate as much blood as any scientist might need for DNA-research, to take part in as many physical examinations as needed, to 'perform' in med. schools as often as nescessary to educate the medical profession, to participate in a thousand or more surveys as long as it will help find a cause and a cure for all of us.

Still going strong!

Margareth

By Leon Roomberg on Tuesday, May 28, 2002 - 07:03 am:

Dear Margareth,

Pain is a message from your body to DO SOMETHING.

While you don’t want to hear about drugs, the right combination of drugs and physical therapy may lesson your agony.

I spent 2 years in bed as a teenager, mis-diagnosed and mis-treated by very intelligent and very educated doctors.

I spent high school learning to walk again, and to balance painkillers with my desire to function in the workplace.

It was not until age 40 that my EDS was properly diagnosed and not until 42 that I stumbled upon a pain specialist who found the right combination of medicines and physical activities for me.

I am able to love my work and take joy from my family by reducing the pain to a manageable state. My condition is better managed today than at any time in the last 33 years since my first dislocation. Yes it is always there, but my pain does not define or own me. I work 50 to 80 hours per week and spend no less than 3 hours per day with my children. Your condition may or may not be worse than mine, but fight the fight anyway.

Yes, I limit my physical activities greatly. Yes, I am too uncomfortable to sleep more than a few hours at a time. But I focus on what I can do (push buttons on my computer with 6 of my fingers and engineer computer solutions) instead of what I can’t do (walk or drive without pain, twist-open bottles, etc.).

Do not give up. Do not stop pursuing doctors until you are helped. Remember than only one doctor in dozens may have the skill and experience to help you in your condition. The odds are that there is some combination of medications and physical therapy out there that can improve your situation.

-----------------------------------------------------------------------
Pain approaches:

For some sufferers, Vioxx is good for most but not all days.

Pain management is sometimes better handled by a pain specialist than a general practitioner or rheumatologist.

Some people respond to a combination of a multi-pharmaceutical approach that may combine a Cox-2 inhibitor (Vioxx or Bextra or Celebrex) with real pain killers (such as Ultram) and even with anti-anxiety or anti-depressants (such as Buspar or Zoloft).

Some people respond best to a combination of the above medicines with water-based physical therapy (slow, in-pool, exercises to strengthen and tighten tissue around joints).

You might need your doctor to do a telephone consult with an EDS expert.

Some are listed at:

http://www.roomberg.com/edsdocs.html

Good luck,

Leon Roomberg
LRoomberg@aol.com
www.Roomberg.com

By Dawn S. on Tuesday, May 28, 2002 - 07:30 pm:

Becky, the progression of your pain echos mine when I was a teenager. Shortly after puberty I started having severe, never before experienced pains in various joints- usually 2-3 joints in pain for a few months, then the pain would fade from those spots and begin in different joints... I was tested for juvenile arthritis and that came back negative. My doctor then said it was all in my head...No it wasn't, it was in my joints, but you couldn't tell him... After about 2 and a half to 3 years of constant pain, all the pain miraculously went away until I was in my mid 20s following a few accidents...I hope you have a break soon in your pain... Dawn

By Sharon French on Monday, April 12, 2004 - 05:04 pm:

Hi all, I'm just jumping in here, not knowing who I talking to but so appreciating all of your messages. My granddaughter has Larson's syndrom.
She is 7 and has many surguries, but she walks well and goes to school and participates in life.
I think she maybe does not have a difficult case,
However, the dr has said by the time she is an adult she will spend some time each day in a wheel chair. Can I please tell you, though, as a a grandma, what a wonderful little girl she is.
If I had the chance to make her different, I'd really have to pray about it. She is so wonderful as she is.

By Margareth on Friday, April 16, 2004 - 12:35 pm:

Hi Sharon,

You have must have a wonderful granddaughter and she has a wonderful grandma!

Margareth

By Margareth on Friday, April 16, 2004 - 12:46 pm:

Since I am here I might as well give an update on how good it has gotten sofar. Well... The new painkillers proved to be a bit more than I bargained for. They were massively addictive and I am glad I am not taking them anymore. The pain is worse again obviously, but I am dealing with it OK. Some days I spend on the sofa, others I study very hard. I might actually graduate someday... The active days I feel so good. Those good days always result in a period of bad days because I overdid it once again. The bad days I get rather depressed but if I just rest enough and if I am patient enough in the end I will get a couple of good days again.

I can do anything! As long as I don't.
I am happy.