Fibromyalgia thread 2

Middle, TN(Zone 6b)

Hi there all you FMS sufferers. I thought it was time to start a new thread as the other one had gotten rather long. We "birds of a feather" need to flock together and share our mutual miseries. "Misery loves company" and I think that our condition is one that leads to a need of finding how others handle the condition. Since this is such a strange illness and not a lot is known about it, I think it benefits us to know some of the little tricks of dealing with the condition that others find helpful. Come on along and join in the "fun".

Georgetown, TX(Zone 8a)

Glad I found you! And I agree, this is one of the things I just need to share. It's so widely varied, and so little is definite.

Sharpsville, PA(Zone 5a)

Elena, we are here! All us sick and sufferin!
I didn;t know how to hyperlink either. till I sat in front of my pooter and just thought...how would they do that. So, I looked at it for like 10 minutes, then, thought......See where it says (mine says location) at the top of your screen? the http stuff???? You write that down in your posting EXACTLY as it appears...then.... it will show the word "hyperlink" when you hit preview your posting at the bottom of the page...so, you hit that ...and if you are lucky, it comes up...If not. you did something wrong. then. hit the Back button and hit send and your posting will be sent. Its really easy as soon as you figure it out. I AM teachable....for a sick blonde!

Sharpsville, PA(Zone 5a)

My friend sent me this article the other day that was in the 'Arthritis today' basically...it says that they are having great results with Tramadol(ultram) Out of 100 people, 69% had relief with out troublesome side effects at doses of 50~400 milligrams a day. (journal of clinical Rheumatology, Vol.6 No5.)
The only trouble I have had with it is its not on a listing of pills that your insurance will accept. so, my doc was giving me samples to see if it helped. Well, Then....I decided to switch insurance plans. so, I discontinued mine. WELL, That was a huge mistake!!!!We are talking LARGE!!!!!! Did you kow that if you have had been diagnosed with Fibes that that is a flag against you and you get turned down for insurance???? Well, YA DO!! I am living proof of it. So, Becareful out there!

Middle, TN(Zone 6b)

Hi Ming. We really must stop meeting like this. LOL

Good advice in that last posting. Did the medication help you when you were taking it? I can't take most medicines because of my stomach condition. Next time I get a checkup I will ask about that one. What a crying shame that you have been turned down for the insurance you wanted. I guess that is one of the only advantages of getting old and getting medicare. I also have AARP insurance. I am hopeful that those are going to be ok as I am new to them as of 6 months ago.

What a bummer to find that folks could be turned down after being diagnosed with FMS. It certainly sounds like folks should keep their mouths shut as to that diagnosis just so that won't happen. I am really amazed as it isn't a life threatening condition, doesn't require surgery, transplants, chemo or any of those terrible things. That just doesn't make any sense. Our medical situation in this country is really getting serious when people can't get insurance, can't buy medications and don't know where to turn. It is so sad.

Elizabethton (Stoney, TN(Zone 6b)

Here's how I hyperlink.
I put my cursor at the 'location' http (the one I want to hyperlink to) and highlight by clicking. Then I press Ctrl and c at the same time. (This means copy.) Then I put the cursor in my msg where I want to put the hyperlink and press Ctrl and v at the same time (this means paste.) Try it, you'll like it!

Middle, TN(Zone 6b)

Thanks Grannylois and Ming. Next time I need to hyperlink something I will give it a try. Don't know why it has me spooked. Guess I am afraid to fail and have 9213 people know it. LOL What is the expression, "Pride goeth before a fall." You can all watch me fall. ha

Sharpsville, PA(Zone 5a)

Elena, the ULTRAM really does help! It keeps your legs from dancing at nite. And it lets you sleep. Not every nite...It would be too much to ask to sleep EVERY nite. Ask your doc. You can take up to 8 a day. I took 2 . One in the morning . one at nite. I only have a few left. So, I am down to taking just the nite one. They have something new too that just came out. it is called ULTRASET. it it 37mg of ultram , instead of 50. and the rest is made up of Tylanol. ANd If DAVE had a spell checker on here, I could SPELL better!
GRANNY, tha t sounds really cool way to hyperlink, but, I am mac. not PC.. so, I don;t know how to do it any other way

Middle, TN(Zone 6b)

Hi Ming. Thanks for the info. I don't have dancing legs thank goodness. I have just about everything else though. I take a 12 hour drixoral every night for allergies and that helps me sleep. If I need to slow down the pain I take a tylenol and that usually works. I have always had a very high pain tolerance, thank goodness. I am sleeping ok right now. Juat hope it lasts a while. I don't have nearly as much pain when I get my proper REM sleep. 6 months ago I was not getting proper sleep but right now I have it pretty much under control. I am really having a time with my energy level however. I am not "fit for killing" these days. I hate it when I tire so easily. I just have so much I would like to do. Oh well, at least I don't have a terminal illness and can get up and go if necessary. Lots of people can't do that. I am thankful for the health that I do have and just want to learn all I can to learn to cope better.

This message was edited Saturday, Apr 13th 10:28 PM

Sharpsville, PA(Zone 5a)

did you get a chance to check out the http://www.cuddleewe.com/ site...my friend just loves her's.....It is amazing just how much better you cope with things on a good weeks sleep.

Middle, TN(Zone 6b)

Thanks Ming. I don't have time to read it tonight but am bookmarking it to read tomorrow or later. I tell you, getting that REM sleep makes all the difference in the world. If other sufferers can learn that it will make all matter of difference in how they feel and how well they can cope.

Sharpsville, PA(Zone 5a)

I am off to dream land even as I type!

Seymour, IN(Zone 5b)

I agree with the sleep thing. When I can't sleep, my pain and fatigue snowball and then my shoulders hurt too bad to sleep, and the less sleep I get, the more pain I have. I sometimes have luck with the generic Tylenol PM. I take two and don't have any side effects. My friends all say they are real drowsy the next day after taking them the night before. Is Ultram in the antidepressant family of drugs or a pain reliever, or a a sleeping pill? Thanks, Lou

Sharpsville, PA(Zone 5a)

Pain reliever! It seems to help. I haven;t done a 'search" on it lately

Sharpsville, PA(Zone 5a)

Pain reliever! It seems to help. I haven;t done a 'search" on it lately ps. It doesn;t make you feel stoned, or goofy. I can work, do anything. It just "helps"

Sharpsville, PA(Zone 5a)

So, we are in to the second week in April...How is everyone feeling....You all got awful quiet all the sudden.

Georgetown, TX(Zone 8a)

Achy, tired, allergic, but no more so than usual, I think. How about you?

Middle, TN(Zone 6b)

About the same and we all know what that means!!!!I wish we could get some other folks to reading this thread. I think it is good to bring it up once in a while just so others might notice it and be able to pass the knowledge we have gained on to others.
Hang in there gals. I can handle my FMS much better if I am not cooped up in a dreary house all the time. Gardening gets my mind off of it even if the pain is still there.

Sharpsville, PA(Zone 5a)

it DOES help to be able to get out of the house.! Dh and I started walking in the park....It hurts. but I do it anyways! With a smile! :) Had enough frowns

Middle, TN(Zone 6b)

I really must get back to walking. I am thinking that my bones and heart need for me to be doing that. It is hard to force the body to do it but I think it is one exercise we can do and not feel like it is draining our last bit of energy. Now that the weather is nice I am going to make an attempt to get back out there and walk several mornings a week for a short walk anyway.

This message was edited Saturday, Apr 13th 10:29 PM

Sharpsville, PA(Zone 5a)

One Day at a Time. you do not have to walk far. or every day.

Biel, Switzerland(Zone 7a)

I am glad I found this thread..althoug why I am still awake is a mystery!I was diagnosed with Fibro 2 months ago,and I was shocked!After 6 months of this and that to figure out why I went from Hero to Zero,I am a bit relieved that I know why..but only a bit. My doctor has prescribed 1 gram of Tylenol for pain every 6 hours and Elavil to sleep..I am not a pill-taking sort of gal,so this is really doing me in.Elena,I think the sleep thing is important,but I have been woken up by pain so much,I don't know what the word means anymore! I don't even dream anymore,because sleep is a 2-4 hour thing for me.Even the therapy does me in,and funny thing..she wouldn't mention her diagnosis on my recommendation for therapy..something to do with Insurance! Well,I finally am coming to terms with this,and I find this the best place to do it!!!!
Gwist

Sharpsville, PA(Zone 5a)

I was first given Evavil. I felt like I had an elephant standing on my chest. So, I got rid of them and just "lived" with it for years. Some people can take it. not this girl. Keep us posted on how it works for you

Biel, Switzerland(Zone 7a)

Mings..I haven't started it yet..my birthday is coming up,and I want to drink myself silly next week!! What a reason,but you only live once!! I can't take most pain meds without that "elephant" feeling,but they are only 10 mgs,so I am hoping I can wake up the next morning!I will keep posted,but even sitting too long does me in(I guess secretarial work will never be for me).
Gwist

Sharpsville, PA(Zone 5a)

happy birthday! Like I said , keep us posted. maybe it will be great for you! ! I really like the Ultram..I just take 1 at nite before I go to sleep. Speaking of which. ...have to go do that.

Middle, TN(Zone 6b)

Mings,Thanks for making that statement about one day at the time and not far as concerned with the walking. The FMS person must not push or we pay dearly for it. Yes Ming, I just didn't notice that I had said that and we can't have our fellow sufferers out there overdoing the physical exercise. I only do what feels ok and when I am tired I quit. My doctor said I should try walking 3 or 4 times a week and only as much as I felt like doing without tiring my body too much. I was told that because of bone loss in my body. I have not been getting enough exercise as far as that part of my physical problems are concerned.

Gwist, I am so glad that we can be of some help to you. It is really frustrating to not know any more than we do about this illness but it does help having a support group and being able to share ideas concerned with the illness. Welcome to our little group of misery sharers. LOL

Sharpsville, PA(Zone 5a)

Elena, Exercise really helps!I have taken Tai-chi and that was VERY nice. really enjoyed that! I took form Nick Graceinin. He is like tops in the world of Wushu and I am lucky enough to have him here in my town..he is like one of the few people I personally know that if you type his name in a "search' on line. he comes up! lol. If you can find a Tai-chi class, you might enjoy that.

This message was edited Saturday, Apr 13th 10:50 PM

Middle, TN(Zone 6b)

Mings, I have been told by my doctor that exercise helps. I just know that it is difficult to drag out and do it when all one wants to do is fall in a heap somewhere. LOL
From all that I read we really do need to do such things as walking, water arobics, and Tai-chi. That is why I am trying to persuade my lazy self to start back doing some of those things. I really can't take any classes that will involve commitment because if I go on a downer I can be down for a month, or two and then have to start back over slowly building up again. When I am down I can't push my body in any way and if I do the downer lasts longer. Therefore I need to do exercise that I can do alone and when I feel up to it. I am a person who will follow through with a commitment even if it means I will be down for ages. I can't do that any longer as it just punishes my body too much when I force myself. I have had to simplify my life so much in order that I not feel it necessary to do things that I don't feel up to doing just because I feel an obligation.

Sharpsville, PA(Zone 5a)

You can do Tai-chi incorrectly from just watching a movie. so, I do not reccomend that. I was lucky enough to get a hot tub last april and that has helped me SO much.

Middle, TN(Zone 6b)

You lucky, lucky girl. I know that the heat massager helps me so much. I don't have any room for one of those wonderful tubs or I would certainly consider getting one. Guess I could give up the kitchen since I never cook anyway. DH does so he might not understand. I might electrocute myself if I kept it in the kitchen and it would also be terribly difficut lt explaining it to people. LOL
Goodnight. Time to see about getting a little of the necessary Rapid Eye Movement sleep that all of us miserable FMS folks need.

Feeding Hills, MA(Zone 5a)

Hello Everyone!

I am new to this thread thanks to an email from Mimi! TY Mimi!!

I was diagnosed with Fibromyalgia approx 7 years ago after
many aches, pains and illnesses that never showed up on on any test. Worked sick for many, many years.

Three years ago I filed for SSD and got it. I just was not able to push myself anymore.

I believe in the simple life now.....I do when I can and don't when it hurts! Except for gardening....lol I do try
to moderate myself better though and do things in small batches....do a little...rest...do a little...rest.

I have vicodin for pain but am only able to take a half pill at a time or it makes me sick and try to suplement that with Tylenol arthritis. At night I have Valium for when the Restless Leg Syndrome is severe. I also have Ambien for sleep...when sleep is impossible. All these things do help except for the side effects :*(

The best tool that I have...the best advice I have been given is to keep changing what I am doing. If I am doing something that requires sitting....take a break and change what muscles I use...go walk around and spot clean for 15 minutes or so. If you are doing something that requires bending.....only do it for a few minutes and then go and do something else for a while. The trouble is I get so involved and am not good at juggling like that...but...when I do remember to do this...it helps. I think the thing that
I miss the most is my mind....hate it when the fibro fog sets in.

Middle, TN(Zone 6b)

Kat, welcome to our little group. Isn't that fibro fog the pits? The only good thing about it is the fact that it doesn't last all the time. I can be a total washout sometimes and feel mentally sharp at other times. I know that has to be really confusing to people who don't know me very well. They probably think I am a closet alcoholic or something. As you know, we can't always explain ourselves to folks for fear of looking like a person who never thinks of anything but their health and has a big imagination to cover up for mental lapses,just plain forgetfulness or laziness.
Great tip for folks about changeing what you are doing from time to time. Stopping at the right time is difficult. We have been so accustomed to keeping on keeping on in this life that it is difficult to change. I am getting good at short term jobs though. I feel as if my whole daily schedule is "piece-mill". I never feel like everything is spotless or really all done any longer. I must say it is easier than the "dive in" jobs that I once did though.

Sharpsville, PA(Zone 5a)

Katbaxter! Glad you found us! :) Thats great that you were able to get SSD. OY! The rain this morning. Just what I needed. or didn;t need. Glad to have you here

Seymour, IN(Zone 5b)

Welcome to this forum new comers! I'm REALLY sorry that you have been diagnosed with Fibro. I was diagnosed ten years ago, and I can really say, the docs here don't know any more now than back then. I have it soo bad in my neck and shoulders. Does your pain stay constant - I mean as in the same kind of pain , all the time. Lately, I've gone from the dull achey soreness, to sudden sharp stabbing pains and the Fibro -Fog has gotten alot worse. Katbaxter, how long did it take to get SSD? I need to be sharp for my dispatching job, and lately, that has been a real problem at work. Lou

Feeding Hills, MA(Zone 5a)

Hi all....I have received some nice notes...Thank you all.

I was a lumber cashier at Home Depot for 6 years and when I ran into pain cycles the head cashiers, etc. would cut me some slack and let me be the first to leave when things were slow....then I started to need a week here or there...when the pain would settle in certain spots...sometimes knees, sometimes shoulders,,, hands,,, etc. My pain has gotten much, much worse. I have had it since I was 23 but didn't know what it was. The Dr. would tell me I had bursitis, carpo tunnel, pulled tendons, etc.
But it didn't get unbearable until I hit around 46. The lower back pain is a killer. I have a mixture of all that you mention, Dispatcher, and it seems to run in cycles. Every time I think I know what set me off....time proves me wrong. They really don't know what to do about it...just keep treating the symptoms. I think I hate the stabbing pain the worse because it is such a surprise! :*)

I quit my job...hung around here for almost a year..kept going out and getting jobs, and then when they would hire me..I always ended up declining them because I knew I couldn't consistently do them. I applied over the phone for SSD....they have 6 months to answer your claim. I was fully expecting to be turned down because I had heard that I probably wouldn't get it. It did take 8 months...not 6.
They sent me to see their Dr. and also a shrink. Then I got
a back check for two years. They considered me disabled from the time I had to take my first 3 month leave of absense from work. I never really worked consistently after that for longer than 4 months at a time.

It helps that I had the same Dr. for over 20 years and he kept detailed records of all my complaints through the years. I am convinced that is what got me my disability.
I was tested for almost everything over the years. All negative. Was beginning to think I was a nut!!

I feel bad for you. I once sent $6,000 dollars to the office and 5 minutes later forgot I sent it....was frantic looking for it...thought it had been stolen...then a coworker told me she saw me send it...I had made a joke that I was sending it to my car:*)

Thank God she knew where it was!

Middle, TN(Zone 6b)

Those memory lapses are terrible. It makes me feel like I need a keeper with me. I can do things and just totally forget about it. I have learned to make notes about everything and file them alphabetically in a little box that I have just for that. I leave red post it notes for myself in strategic places when something is about to come to the point or date of needing my attention. I keep my calendar in front of me at the computer so that I can't miss noticing if a date has been marked for something. I start noticing things like leaving my keys in the door on the outside of the house or putting something in the refrigerator that goes in the cabinet when the big time fibro fog is about to close in on me. Then I try to be super careful so I won't do something to make an idiot of myself. I haven't forgotten where I live yet (ha) but can't really drive much of anywhere any longer as the traffic is too much for my easily distracted mind. I just can't concentrate on it all at the same time. I hated giving up my driving as it really does limit me as to where I can go alone. DH is a lamb though and takes me anywhere I want to go.

Knoxville, TN

well I DID'NT even know you guys were here....maybe some
on your posting can help...i have been dealing with fibro
about 5 years now, Its so hard to deal with and i am being
treated for depression, because of the up's an down's of
pain and stiffeness, thanks for posting this.

Middle, TN(Zone 6b)

Hi herblady. Welcome to our little group. We are all in the same fix I am afraid but as they say, "misery loves company". Glad to have you here to moan and groan with us. LOL

Sharpsville, PA(Zone 5a)

oh! it was groaning the other day!!!!! I thought it was thunder! I hurt so bad on Sunday. And here it was all us...alll over the world groaning! lolol
One thing my Dh has taught me and he doesnt; even know it..."never take your self too seroiusly, and sence of humor helps you cope'>> And no matter what...YOU ARE NEVER IN AS MUCH PAIN AS YOUR SPOUSE IS!!!!!!! Am I right????

Feeding Hills, MA(Zone 5a)

Where are you in zone 5 mimi? Sunday was horrible for me
with the thunder and lightning also. I cannot remember when
it hit me so hard....LOL

Herblady...keep the faith. I too went through a clinical depression when I finally found out what was wrong with me after all those years. Glad to have something with a name finally....but really depressed about the crimp in my lifestyle... I called a good counciling center and got some help....just talking about it helps to keep it sane.
I try and remind myself that a lot of people have it much worse, my 25 year old niece has MS, and at least fibro doesn't eat at your body like that does.

But it does eat at your spirit. So do what Mimi does? Laugh at what you can :*)


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