Are introductions in order?

Yep, that's the problem. Fibromyalgia is non-inflammatory pain so NSAIDs are useless. The only thing currently available is opiates, which most doctors won't give you. You tell them NSAIDs don't help you and they tell you "take a different NSAID". I've tried them all and none of them work, but doctors only half-listen and if the last one you listed was Aleve, they'll tell you to take Advil (which was the first one I tried eons ago!), or vice versa, even if you already told them you'd tried it and it didn't work.

What helps me is heat, whether heating pad, ThermaCare or hot bath. The last is most effective, because it treats the whole body at once. But highly inefficient, because I cannot take the computer into the tub to keep working.

But, take heart, they have determined that the reason for the extreme pain is an imbalance of Substance P, and I'm aware of a couple clinical trials for fibro meds that are supposedly regulating Substance P levels.

So long as the Substance P meds don't get caught in the same FDA black hole as Ampligen (which has been "18 months from approval" for the full

18 years of my CFS diagnosis, #$%^&!!), there should be some relief for fibromites in the next 2-3 years.

Meanwhile, google "fibromyalgia" and "clinical trial" and see if you turn up anything in your area. Unfortunately, I get closed out of them because I have multiple other diagnoses that would complicate knowing whether the drug actually works on my fibro.

Reply to
Karen C - California
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Reply to
T Michelle Jensen

snipped-for-privacy@mid.individual.net...

As far as anyone can tell I was born with Fibro in my legs and feet and major nerve damage also. I have found that some anti-depressants will help and the new restless leg drug which is actually a parkinsons drug may help some people. I take morphine 12 on 12 off, have not had any problems with it. Keeps me going. They also now have spinal block therapies where they insert a wire into the spine, it sends confusing signals to the problem areas to mess up the pain signals. You have a remote to use this. I am now just using the morphine and doing pretty well, did have a sympanthetic nerve block a few months ago, made it worse UGH. Have a mechanical black yesterday it will b e a few days before I can tell if it worked. But I lead a pretty normal life anyway pain is just a part of it, always has been. Morphine does the least damage to the body of all the pain meds of it's strength making it good for long term use if you have the will power to take it 12 on 12 off.

Dana

Reply to
Dana Compton

You're welcome!

The pain has been waking me up, so I'm going to have to go back to the doctor and beg for some Ultram or something. The sleeping pills that actually put me to sleep for 8 hours every night made me faint every morning, so I really don't want to go back on those if I can help it. Sleeping 2 hours, waking up in pain and having to wait 2 hours for the pain to abate enough to go back to sleep for another 2 hours is not beneficial to my work schedule.

Reply to
Karen C - California

Dana Compton wrote: > I have found that some anti-depressants will

They do help some people; me they just make sicker. One put me nearly comatose and another made me violently ill for hours, even when there was nothing in my stomach to come back up.

This is, in fact, one of several ways to differentiate between a CFS diagnosis and a depression diagnosis -- someone who's depressed will feel better with anti-depressants, someone with CFS either will have no change or feel worse. I definitely felt worse.

Then I got a sleeping pill that does nothing for depression, and I slept ... something the anti-depressants hadn't achieved. (I also fainted every morning, but you take the good with the bad when you finally find something that helps!)

Reply to
Karen C - California

Well, a bit of a correction here: Someone who is depressed will not necessarily feel better with anti-depressants. In fact, they may have to try many different types/classes or combination of meds in order to feel better, and suffer terribly from side effects in the meantime, whether or not they "feel better".

Dianne

Reply to
Dianne Lewandowski

Dianne Lewandowski said

That's so very true!!! Several years ago, I took a drug to combat my S.A.D. I didn't realize until I was off it what a number it did on me -- zombie state, nauseousness, and more.

Reply to
anne

No way... Bex is NOT 10! Nope, not buying it... not at all.... she's six at most!

Hi Alice, I'm Tegan, no kids, widowed (I guess, never really sure about claiming that status, since we were never married, but were together 20 years), and have one aged cat, Chen Li, who'll be 18 in December. I started stitching when I first saw TW's "The Castle" chart and knew I wanted to do it. 20 odd years later, I've still not done it, but it doesn't stop me from starting other things. I lost interest for quite a while after my SO passed away, and still struggle with maintaining my commitment to actually stitching something. He was disabled, so was home all the time, and when I would work on stitching something, he was almost as fascinated with seeing the design emerge from nothing as I was. He was quite the cheerleader and for a very long time it was almost impossible for me to stitch because it seemed like the best part was missing.

I still can't believe Bex is 10.... gods I'm feeling old.... Tegan

Reply to
tegan57

On one of my Yahoo groups, we've started an off-shoot list of everyone who's wanted to start The Castle and put it off for various reasons. We've decided to start a stitchalong on January 1. You are welcome to join us. You can see my fabric choice at:

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Well, heck, you can even see me there... LOL

Tegan

Reply to
tegan57

Omigosh, ultram -- it totally freaks me out. I can't take nsaids either -- so doc gave me ultra, -- and the world became liquid, reality wasn't real -- it was just weird. If ultram affected most people like that, it'd be illegal.

Yet dh takes it, and has no problems at all with it.

Reply to
Jere Williams

Different people have different reactions to drugs. One of my support group members swears by Aleve. I spent hours counting the time till the next dosage so that I could safely take something that *would* work.

When I applied for the clinical trial, I expected to be kicked out because I have weird reactions to everything. Instead, they were very happy to have me -- "if anyone's going to have a bad reaction, it'll be you". And, sure enough, I was the only person in the whole trial who had fainting spells from it, and was the person worst affected by the mental fog. But I was also one of the few people who was 100% sure whether I was taking real drug or placebo because the positive effects were that dramatic.

Reply to
Karen C - California

Thanks for starting this thread, Alice.

I'm Mickey, 32, married 6 yrs, and DH recently dragged me up to Edmonton, Alberta (from Mansfield, Massachusetts), where I started grad school (again) for a PhD in chemistry. One pet bearded dragon who rules our small condo. Don't all pets?

I've been stitching on and off for since I was 7 or 8. My maternal grandmother always had a needlepoint piece in process, and my mum stitches and crochets. I gravitate to cross stitch and blackwork, though I also knit and crochet, and there are a few surface embroidery projects in my stash. Prior to starting school this fall, I wasn't working, so I had a quite a few finishes of previously UFOs - w00t! (And I still need to get the pictures up on Webshots.)

I've been following RTCN for years, mostly as a lurker. And unfortunately, school is seriously cutting into my stitching time... ah well, finals will be over in a month!

--Mickey Edmonton, AB

reply to: mickey18385 at yahoo dot com

Reply to
mickey

I'm having shoulder trouble this weekend. The pain isn't up in the shoulder joint. It feels like the bones are breaking just below the joint. Since I woke up with it and know I haven't had an injury it is just the fibro, but such an annoyance. My medicine tonight was a Harry & David Moose Munch bar. 300 calories, 190 of them from fat. Yum!

Had a big dinner after church today (bishop was visiting) and they had tons of food leftover so we bought a huge pan of thick-sliced scalloped potatoes, about two pounds of sliced ham, and a tub of green beans for $10. The church kitchen hostess knows her food though--it's all good. Shouldn't have to cook at all for several days. For this I am VERY thankful!

Reply to
Brenda Lewis

LOL - I must arrange visit to Chez Caryn & Clan - to verify this.

Tegan - seems to me you definitely can claim widowhood - 20 years is a long time together. And sometimes it's just easier to use a standard kind of title to describe something like your situation. Can certainly feel for you missing your cheerleader - DH - who is well - is amazingly my cheerleader and always intrigued with whatever creative thing is happening. So much so, that a couple of times in the LNS, he's been helping people - then realized

- "Oh, no - this has sunk in on me" . Just enjoy your stitching for you.

And I'm saving my Castle chart to do when you're ready to start. Isn't someone on the group going to start with a cyber crew in January, IIRC?

LOL- I definitely am going to go see the evidence in person next time DH has to go to the rink in Prince William - we pass within a mile of their place on our back road route.

With us, we have 1 godchild in college, 1 a senior in high school - with a personality scarily similar to mine, 1 that graduated BU in May, a niece that started law school in Sept, a nephew in college (same age as godchild guy), and a niece in 10th grade. The kids are all convinced that DH & I are much, much younger than their parents. By the time we're done with them, they'll think I started university at 10 instead of 15.

ellice

Reply to
ellice

I may just join you. With projects like this, it seems a good thing to have a crew to commiserate with. And, I have a great luxuriously framed poster from the Chateau in Saumur that would go so well with the finished stitchery piece - in some place or other.

LOL - I did, and commented. If we do the Stitching Post open house on Dec

2, I bet that I can find some lovely piece of fabric for the castle...

ellice

Reply to
ellice

I'm sorry about the shoulder pain. I'm having the on again-off again thing with the bone spur in my "good" leg, and the lesion/joint acting up in the bad one. But, I'm staying at the 2 - 4 tylenol level for now - really hoping to put off surgery til late spring. Your medicine sounds yummy.

We've had a so not Weight Watchers 2 weeks - and I can tell. Was down a size

- yeah - into normal tops, and still "big" bottoms - but, the fluffy me has definitely risen a bit. I think Halloween candy did me in. But, have determined that post the NJ trip for T-giving - will be back on plan.

Now I'm really jealous. Sounds yummy - well the potatoes. Not much of a ham person. DH reffed yesterday morning while I did housestuff (uh huh). Then came home, we went out to grab lunch/brunch - and being indecisive finally got somewhere at about 1:30. Then went for a lovely drive through horse country (Middleburg, Upperville) and up around to come home - via where we started - and ended up running through Target (I needed a loaf pan, and some kitchen organizer stuff). Making us almost late for him to go ref again - back in Arlington (20-25 miles?). For a thrilling double header of men's A league. Some skilled players, really - balanced with some incredible idiots. So, I brought my bullet thermos with Chai Tea (home made) and sat on the balcony or in the stands (at Capitals new practice facility) and knitted socks! En route home - at 11 pm - thinking - dinner would be nice - only thing open as we pass the diner locations - Wendy's or McD's. So, Wendy's grilled chicken for us. So, you just made me jealous for nice comfort food. The alternative - our standard of cereal for dinner just didn't resonate.

ellice

Reply to
ellice

Well,since I have sat on my hands for a while, I will break down and post. I am Gillian aka Gill and live in Central Florida for now. This morning a spiffy "For Sale" sign hangs in our front yard. Where will we move to, who knows??? I am 70, and DH, Jim, is 67. We have a big RV, and can live in that comfortably for long periods of time ( 5 months this summer, used to live fulltime for 4 years in a smaller one).

Anyway, I joined this group probably 9 or 10 years ago. Folks have come and gone, but I have made somelife-long friends here. I have sewn or knitted since I was four, and have enjoyed cross-stitch since it first took on in the mid 1970s. Between us we have 11 grandkids, and they all have their birth samplers.

Because we are moving I am having to go through my stash, and get rid of some of it........how sad! It was fun acquiring it, though!!

Oops. forgot family. This is a second marriage. I have a daughter in MD(44) with a DH and three kids 10,12,16. My son is in Japan, aged 42 and married a Japanese lady a year ago. Named Akayo, like Bobbie V's daughter in law ( I met her over there, and loved her). In fact they are at the same Base. First marriage for each and I don't look for grandkids there.

DH's kids..........well the lest said the better. However there are 8 little kids there,so we do remember them , as grandparents should.

Gillian/Gill

Reply to
Gill Murray

Guess I didn't add the Military life. The departed DH had 24 years in the Navy when he died, and we had been married for 20 of those years. DH#2 is retired Air Force, and DS is a 23 year Navy Veteran. My DD attended 3 High Schools in the four years; Summerville SC, Rota Spain, an Great Mills MD.

Gillian

Reply to
Gill Murray

And then there are those of us who lived in the same house from the day we were born till the day we left home for good.

Reply to
Karen C - California

On the intro end of this thread. I am Dana Compton. Tulsa OK area. I married young, been married 21 years now. Both kids are grown and successful. Our daughter and her hubby have 2 children 4 and 2. Our youngest is in college an accounting major. Hubby is plant manager of a small business, I have never really worked for money. I started sewing at about 2. I still remember sitting on the floor pulling my beloved nanny's needle through the fabric after she had started it, over and over and over. My mother did not sew so I picked up what I could from various people through the years. I started cross stitch as an adult and do a lot of sewing for the home. We bought the Ralph Blane Estate (Judy Garlands song writer, quite famous) that had been allowed to fall into almost ruins a couple of years ago. We are about done with the work (we did most ourselves) and I am READY! LOL. I have fibro but manage to rule it rather than it ruling me most of the time so far. I have horses so I spend a lot of time at the stable. I am not nearly as advanced as most here I am sure but learning things is the fun part so thanks for letting me join in!!

Dana

Reply to
Dana Compton

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