By Gwen on Friday, July 06, 2001 - 04:57 pm:

Just thought the following extract from a recent
report I had from a rheumatologist may be of
interest. You will appreciate that it has been
compressed slightly and that the capitals are mine.

"I think the pain is related to osteoarthritis
linked to joint hypermobility syndrome.
Ligamentus pain also seems more common in
hypermobile jointed people. She has chronic pain
type syndrome clinical features without it being a
pure case of Fibromyalgia Syndrome. I don't think
trying to differentiate the sources of her pain is
going to be helpful. THE MANAGEMENT IS VIRTUALLY
THE SAME."

I am currently on a 4/52 trial of Vioxx as the
rheumatologist suggested I might feel better on
long acting analgesics rather than taking
medication only when my pain level reached the
stage where I was unable to cope with it.

By Vicki on Saturday, July 21, 2001 - 09:55 pm:

Gwen
I find your article interesting. I was diagnosed with fibromyalgia about 8 years ago and my daughter was diagnosed with hypermobility about 2 years ago. I believe there must be a connection between the two. Sometimes I look at her and she looks the way I feel. I can really relate when she starts having pain. the difference is you can tell she is without a doubt hypermobile.
vicki

By Gwen on Saturday, July 21, 2001 - 11:46 pm:

Just as a follow up. The Vioxx was a super
painkiller, quite the best I've tried but alas
after six days I got the gastro-intestinal
complications and had to go off it. I am now on
Tramadol which really isn't very effective. It
just takes the edge off the painand no more,
although the doctor says I can increase the dose.
I don't find it's as long acting as the Vioxx
either. When I suggested Oxycontin to my doctor
she threw up her hands in horror and said she felt
its addictive effects had been very much
underplayed. But what the hell! I'm 55 years old
and have been in pain for the last twenty of them.
I'd really like the rest of my life to be quality
living. It's not as if I have more than about
another 20-25 years and I would like to enjoy them.

By vicki on Sunday, August 05, 2001 - 09:29 pm:

Gwen
has your doctor tried celebrex yet. I know what you mean about the stomach upset. I took the vioxx and my stomach started to act up. My stomach seems to be very sensative to drugs so my doctor tries to be extremely careful. I think though if you were to try the oxycontin you would find it dosn't provide the extended relief like vioxx. It can also be upseting to the stomach. I understand about the pain believe me. There are days I would like to just cut off my legs. But you are still young at 55 and 20-25 years is a long time to be a drug addict. I have had my times though where I would give a arm and leg for a effective pain relief so I'm not being a smartbutt. But being drugged 24-7 isn't a quality life either. sometimes it helps to talk to vent on the message board. we all have to stick together. Let me know if you try or have tried the celebrex. If you find an effective pain relief let me know too. thanks
vicki

By Gwen on Saturday, August 11, 2001 - 06:35 pm:

Can't use Celebrex because I'm allergic to
sulfonamides. If you have this allergy then will
have an adverse reaction to Celebrex.

Using Opiates doesn't mean being drugged day and
night. Digesic, which I have used intermittently
for years is an opiate and I've never had an
addiction problem. Generally people who use
opiates for pain control are less likely to become
addicted than recreational users.

My problem is far more likely to be one of
compliance. I dislike having to take medication
and because of working shifts frequently forget to
take what I do have at the same time each day,
although I generally don't miss more than one
dose. This is why the idea of having something
that only requires taking once a day is so attractive.

I remember seeing an article a couple of years ago
about an analgesic which is derived from the venom
of sea snails. It homed in only on the pain
centres in the brain and was said to show
absolutely no side effects (Magic huh!) It was
undergoing clinical trials. There doesn't seem to
have been anything about it recently so maybe a
shelved project.

I don't agree with you about 20-25 years being a
long time to be an addict, if it did happen. After
the same amount of time being in chronic pain I'd
gladly take the risk.

By Lin on Sunday, August 12, 2001 - 05:37 pm:

Gwen, i am the same way, i always forget to take my medications when i am supposed to take them a few times daily. Many of my medications are now once daily, my allegra, Lodine XL, and asthma medication. But i am also on neurontin 4 times a day. All though i usualy forget to take it, i remember quite quickly from the pain. I am on Lodie XL as a NSAID for my joints, but it doesnt work much. my doc tells me to continue taking it, eventualy it will build up in my system enough to be effective, i think he's stupid. i am 16, and dont like being in chronic pain either, i spend alot of time on the couch icing alot of my joints, instead of doing things i used to.
Lin

By Vicki on Sunday, August 12, 2001 - 09:31 pm:

Gwen,
I know what you mean about not being good at taking your meds. I work 12 hour shifts and go to college, so alot of time I'm up and running before I've had time to think about taking my meds and then I've left them at home and by the time I get back home I'm so tired all I think about is a hot shower and bed. I would gladly tape my meds to my forhead if they could give me something for the fatigue!!! I under went a sleep study last week and I have to go in next week to get the results. I think I've been in pain so long that I expect it and can handle it but the fatigue is about to make me want to pull my hair out. I had hoped during the summer vacation I would catch up on my rest. It dosn't seem to make a difference. I just don't know how I'm gonna handle school this semester. the sea snail venom sounds almost to good to be true. I have a side effect to just about everything. I had surgery last August and my doctor told me to tell the athesiologist to give me 1/3 of a regular adult. a little goes a long way with me. I was on lortab post op. I didn't have a bm for 6 days then I started throwing up. I tired to correct it before it got that bad but nothing worked. My doc. said "remind me NO more Lortab!!!" I hate being that chemical sensitive. That's why I'm not taking anything now. I'd love something with no side effects that really worked. well I'd better go this is turning into a book. bye
Vicki

By Gwen on Tuesday, August 14, 2001 - 07:49 pm:

Finally tracked down the sea snail venom. It is
manufactured by Neurex and called SNX-111. Trade
name is Ziconotide. Lots of information on the
net about it under either name.

By Bridget on Wednesday, August 15, 2001 - 10:01 pm:

Vicki,

You mentioned always getting side effects with drugs, and being chemically sensitive. Is this a common problem with EDS/HMS? ANyone else? My husband has an awful problem with all meds, and is quite allergic to several strong chemical odors as well. I am amazed that he can work full time in his condition without medication. (He really can't, but does, you know how it is....)

Bridget, Tucson

By Vicki on Thursday, August 30, 2001 - 10:50 pm:

Bridget,
sorry it has taken me so long to reply. I was diagnosed with Fibromyalgia and my daughter was diagnosed with HMS. Chemical sensitivity seems to be common with people with Fibromyalgia (FMS). My daughter dosn't seem to have as much of a problem as I do. I know what you mean about he can't really work but does anyway. I tend to keep pushing myself even though I probably shouldn't but who has the time to just give in to it. Sometimes I have to plan time just to relax and take time for myself.
Vicki
Mesquite, Tx

By Vicki on Thursday, August 30, 2001 - 10:53 pm:

Gwen
how's the SNX-III working for you? would you recommend it? Were do you get it from and have you experienced any side effects? Let me know
thanks
vicki

By carla on Wednesday, February 20, 2002 - 02:01 pm:

Gwen,
can you give me the exact reference paper for what that Rheumatologist said as I have hypermobile symptoms and mainly ligamentous pain ,but also muscle spasms too. I am a doctor and my Rheumatologist isn't sure what to call what I have. Maybe if there was a name I could tell people then they might be more sympathetic to my symptoms. I understand that people struggle to get relief from their distressing symptoms. They often take a cocktail of drugs and get side effects and little relief. I was going crazy and desperate for a "break through" when i recieved acupuncture from my physio. I have been so improved I have learned to do it myself so I can help others too.
For the uninitiated acupuncture can be an analgesic /antiinflammitory /antispasmodic and sedative. What do you all think? Anybody else gotten relief this way??