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  #431 (permalink)  
Old 11-03-2002, 05:53 AM
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Meds

I've been on meds for so long I can't remember when I started them. I take prozac and flexiril. For pain, I use a lot of ben gay, icy hot, baths. I have a problem with taking pain relievers. I also take a hormone replacement (hysto years ago) and a blood pressure pill and 1 aspirin every morning.

I think the only thing that keeps me going, and I mean this with all honesty, is my job. I have to get out of bed every morning. It doesn't matter if the feet feel bruised, they feel that way every day of my life, or that with every step I take is more pain than I can stand, I have to move. In a wierd way, the more I push myself the more I get used to the pain. At work I am usually so busy that it helps distract my mind from the pain and exhaustion. Granted, it doesn't always work. The other day I feel asleep at my desk and slept for over 2 hours.

On weekends, unless we have something planned, I turn into a bedfast zombie. It's like I need the stimulation to keep going. I don't know how else to explain it. I'm afraid if I quit my job, I'll become a vegetable because i won't have the motivation to move. My hubby is talking about taking an early retirement and staying home and running the household. He asked me how I'd feel if he retired and took over all the cooking, cleaning, dishes, laundry, shopping, critters, bill paying, everything and I continued to work. It took me about 2 seconds to say, go for it. We have 1 vehicle, plus a motorcycle and the way it is now he drops me off and picks me up, he works 7 to 3, I work 6 to 4. If he is home, I can work 8 hours a day instead of 10. He won't know for a few months if the company he works for will accept it or not but in the meantime we are tying to figure all the corners we can cut.

I know this probably didn't help Janet. I think each person has to keep trying to find the best medication and therapy to help them cope to have a somewhat "normal" life. We just have to learn we are never going to be what we used to be and we have to accept it and make those around us accept it. I know I pamper myself alot. When I come home from work, if I don't feel like doing anything, I don't do anything and I don't feel guilty anymore. Hubby either cooks or we eat cereal. Simple as that. If the situation were reversed, I'd do the same for him. I've cut my outside obligations down to the bone. I work, I play with my grandkids, I go to renfaires whenever possible, I take and abnormal amount of photos, I pet my cats and dogs, and I play on my puter. That's my life. I no longer try to maintain friendships or family commitments outside my hubby, son and family and daughter and hubby, except on here. My friends I had couldn't understand exhaustion so I said goodbye to them. Same way with the extended family getting together for any occasion you could think of.

I guess compromise comes to mind here. Or adjustment. I don't know what the right word is. Just try to find what gives you the most comfort and go with it. I know I fought taking the prozac for as long as I could. It still irks me that I need it but I've resolved myself that I do. At first it made me feel weak, and then it dawned on me, duh, this disease made me weak. It wasn't a character flaw.

Oh, dear, I've gone on and on and all you asked was what meds do we take. Sorry. Got on a binge I guess. Hope this helps. Hugs, Linda
  #432 (permalink)  
Old 11-03-2002, 09:06 AM
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Hi Ladyinmaille, You made alot of valid points in your post. I guess excepting your illness is the hardest part. I will strive to do that better and try not to whine. Some days as you already know just are bad....thanks for understanding my venting...

The stress of my job was making me more ill. Started to have heart palpitations, migraines, and high blood pressure...I was always under the gun so to speak. I do so much better at home but I do miss some aspects of the outside working world.

I have alot of trouble with meds...I have asthma and I am hypothyroid too..so this knocks out most of the over the counter help too. I am also allergic to aspirin...So that is why I rely on Icy Hot, tylenol, and try not to sit in a draft...I tell everyone I am a Hot House Tomatoe! lol

I looked at your picture of your friends at work, now it looks like you have a fun place to work and great ladies too! By the way I your muklucks...you are blessed to have yourself surrounded by fun people!

Take care and have a great week ahead of you!

janet
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  #433 (permalink)  
Old 11-03-2002, 12:52 PM
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Janet

I think you are right about having a great group of friends to work with. Maybe that is why I work so hard to keep working. Because there they understand my exhaustion and pain. Like the other day when I fell asleep at work, some of them have to come in my room to get things and they tiptoed around so as not to wake me. They also know my memory comes and goes so they have taken over the more difficult stress related chores. It works both ways, tho, because I am in a position where I can see to it they get perks. One of the biggest perks is the hours they work are very flexible. The second is that the office pays for a lot of our meals. And when one of them falls behind, I let my job go and help them with theirs until they are not so overwhelmed. We are friends, not coworkers. We only have 1 lady there (she was not in the picture) that only looks out for herself. And 1 out of 7 isn't bad.

And I do my share of whinning, too, I know you've read some of my posts where I don't think I'll ever feel normal again. I just wish I had a miracle cure for all of us. I read a quote from a Dr. that also has fms and she said something to the effect that fms is not something any of us would choose to have but once we have it we have to learn to accept it as part of who we are now. It just seemed like a light bulb went off in my head. This is me now. Accept it with its limitations. Its just like we would have ms . Its a disease that you have to learn how to do things differently and not at the same speed.

I am grateful for the meds I take because I do think they help me cope. Someday hopefully they will find meds to help you, too. I'm sure without the meds I'd be curled up in a ball somewhere.

I think laughter helps, too, and we have a lot of that at the office. We have a lot of tears, too, because we care about each other but then again, that's another form of releasing tensions.

Maybe if we keep talking this out, someday someone really brilliant will read this and say, hmmmm, I've got an idea that will really help them. That's my dream anyway.

Hugs, Linda
  #434 (permalink)  
Old 11-03-2002, 01:29 PM
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WE need to stick together! ! !

Hello Linda, Janet and you other lovely ladies, who help me through the days.....and nights;

Well, I went to see another doctor on the 31st (Halloween: how appropriate) lol

She is only 32 years old, so maybe she knows somethings the older ones don't know. I wrote all that I think is wrong with me and she said she could do a few things but not that much in 30 minutes. She made arrangements as you can see below. I was so relieved let me tell ya. She gave me a cream for my hands seems to be workin' Also told me to take the pain pill percodine, but it makes me loopie . But I am taking it.

I go to see an Orthopedic doctor; Nov 5 at 4:00 PM (been to this doctor before) for an x-ray of my lower back. Then to see another ENT doctor; for a (second opinion for my sleep apnea) this is on Nov. 8 at 2 PM.; and then I have an appt. with dermatologist on Nov. 25 at 10:45 AM; for my hands. So much for that...I also have an appointment to go back to see this 32 year old doctor in 6 weeks that will be Dec. 12 at 11 AM.

I just wanted you all to know, so wish me luck. ;-)

Talk to you soon, Cheryl
  #435 (permalink)  
Old 11-03-2002, 02:58 PM
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Cheryl

Sounds good. Now don't give up. You'll be spending a lot of time at different Dr's offices and that can be exhausting and frustrating.

And they will probably try 50 different things until they find the right combination to help relieve some of your symptoms.

As we all know, nothing will put us back to 100 per cent. Most of us are happy when we are running at 75 per cent.

You will still have bad days even with medication but hopefully with the medication you'll have a bunch of good days, too.

I'd say I'll keep my fingers crossed for ya but since I suffer from hand and foot cramps daily, they are usually crossed when I don't want them to be.

So instead, I'll keep you in my thoughts and prayers. Hugs, Linda

P.S. I'm really happy they've found something to help with your hands. At least that's a start in the right direction.
  #436 (permalink)  
Old 11-03-2002, 04:17 PM
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Cheryl, sounds like you are off to a great start. I think it is great that you now have a young Dr and a woman Dr. too....I bet they know exactly what is bugging us.

Good luck with all the tests and hopefully they will give you some answers.

Linda, you gave me some good advice...to accept this and know it is a part of me...thanks for turning on the light bulb....I was fumbling for the switch! lol

Thanks everyone for being so encouraging!

janet
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  #437 (permalink)  
Old 11-03-2002, 07:26 PM
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Hello Ladies,

I have been away these past couple of days, Cheryl I'm so happy to see you've made contact with a doc that seems to be HEARING you! Just being heard meant SO much to me!
Validation of what I was feeling was such a relief for me, I can't explain it...but maybe you ladies understand what I mean.

Janet, I agree that acceptance of the fibro as a part of you is an important part of learning to live WITH this disease rather than at odds with it.... but I don't believe that it means you have to suffer as you live with it....

You asked in an earllier post what meds we take, what treatments we are perscribed. ...

Let me take some space to tell you about me,,,

I am 45, and was first diagnosed at 31, after a bad back injury had seemed to sensitize me to pain...it was like I started hurting...and it never stopped.

I went on NSAIDS and muscle relaxants and elavil, ( a tri-cyclic antidepressent) ..and had 2 surgeries all over a12 year period with limited releif.

I saw orthopedists, neurologists, neurosurgeons, rheumatologists,chiropractors, physical therapists, and psychiatrists.

Two years ago I started with a new chiropractor who was very knowledgable about fibromyalgia. He was very gentle with his treatments, and I started to imrpove. I began, through him to see a Physiatrist. Through him I got good perscriptions for a new type of anti-inflamitory medication called Celebrex. (vioxx is the same) these are not NSAIDS..these are COX-2 inhibitors...they work diferently, and are better for fibro patients than NSAIDS..and safer for your GI tract.

This has helped me a lot.

I also changed anti-depressents. I am now seeing a new psychiatrist that has perscribed Wellbutrin...it works very well for me.... I tried several different ones to get to this.

And believe it or not... The exercise really has helped . ( In the form of physical therapy)...but you can only start that AFTER the pain is under control.

But the drug that is the MIRICLE...is the drug NEURONTIN . This drug was origanally developed to treat seizures. They are now finding it had properties to treat neurologic pain, like the kind of pain we have with arthritis and fibromyalgia. I was incpacitated with my pain...within 10 days it was practically gone, and now, a month later, I'm virtually pain-free. I have gone from 2 percocet every six hours to one every few weeks.

Neurontin is also used to preent migraine headaches, and to treat burn pain amd sleep disorders and a host of other things...It is becomming the miricle drug of the 21st century, even though it has been around for decades. My rheumatologist said the combination of treatments I am receiving now is considered the "cadillac" of treatment plans in the field. He had nothing else to offer me after a 45 minute office visit, because he said the other doctor I was seeing was doing everyting right! I liked the sound of that.

So I guess what I am saying, I don't just throw your hands up and jsut say you'll live with the misery. I KNOW the relief is out there! You just have to insist on receiving it.

I will research the elevated sed rate for you...as far as I recall it is a sign of an inflamatory process goingon...you should follow-up with your physician...did he do a rhumatoid factor or any other tests?...

I'll get back to you.

In the mean time, I think you should at least ask if there are better options for you..and if the neurontn can be one of them, and if not...why not?


Be well and take care.

Val
  #438 (permalink)  
Old 11-03-2002, 09:18 PM
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Thanks Val, I will mention this drug to my Dr. I have to see him Nov 18???? I have been going in every 6 weeks for a recheck...I told him I wanted off the elavil...it makes me hung over in the morning...I hate that feeling. He wants to wait first...I say its not working so lets get rid of it.

I have had every bloodtest available. My RA is neg, so is Lyme, ANA, Mono, and I also had an MRI, Cat Scan, and they are normal too. Which this is not unusual in FMS. They do believe that I also have another illness, but it hasn't fully manifested its way to the surface...I am in the gray area. Could be another connective tissue disease, MS, etc but until I get more symptoms that is all they are telling me.

What a trainwreck I am! lol Glad I had fun when I was younger.
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  #439 (permalink)  
Old 11-04-2002, 01:44 PM
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Neurontin

I've never had that drug suggested. Was it just recently used for fibromyalgia? It would be wonderful if it would relieve the pain. I'm glad its working for you Val. Maybe it will be what's needed for fms.

I go back to my Dr. in December for a complete physical. I will ask her about it then. Thanks for sharing. I knew someone smarter would come on here and give us the answer. Thanks, Hugs, Linda
  #440 (permalink)  
Old 11-05-2002, 10:08 AM
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Here is an article I read just today on-line about a new medication that was JUST approved for treatment of pain and fatigue in FIbromyalgia patients! PRINT THIS OUT and bring it to your doctor! He/She may not have read it yet!

It is a drug that is closely related to Neurontin, but different...I'm going to ask my doc about her opinion on the research.

See...there IS always something new just around the croner...NEVER give up!

In the meantime...persue the Neurontin. It's the best of what's currently available.

Val








Medscape Medical News
Pregabalin Improves Pain and Fatigue Symptoms in Patients With Fibromyalgia


Emma Hitt, PhD

Oct. 30, 2002 (New Orleans) Pregabalin appears to be effective and safe in treating patients with fibromyalgia, according to new clinical trial findings. It may also appear to improve sleep quality, fatigue, and increase quality of life, research suggests.

Leslie Crofford, MD, from the University of Michigan, Ann Arbor, and colleagues presented their findings here Tuesday at the American College of Rheumatology (ACR) 66th Annual Scientific Meeting.

Patients with fibromyalgia experience chronic musculoskeletal pain, fatigue, and sleep disturbances. "There are no approved therapies, and treatments that are used often do not provide adequate relief, " Dr. Crofford and colleagues note.

According to Dr. Crofford, the mechanism of action of pregabalin is "not completely understood," but it binds to calcium channels, modulating calcium influx, which results in analgesic, anxiolytic, and anticonvulsant activity.

In a study sponsored by Pfizer, Inc., researchers evaluated the efficacy and safety of pregabalin up to 450 mg/day (150 mg three times daily) for reducing pain and associated symptoms in patients with fibromyalgia.

A total of 529 patients were randomized to receive 150, 300, or 450 mg/day of pregabalin or placebo during the second of six required visits.

Compared with those receiving placebo, patients treated with pregabalin 450 mg/day showed significant improvement in their endpoint mean pain score (-0.93; P<.001), and they were more likely to experience a 50% reduction in pain from baseline (P=.003), the researchers report.

Patients receiving 300 and 450 mg/day pregabalin also experienced reduced fatigue and improved sleep quality compared with those receiving 150 mg/day pregabalin or placebo.

Forty-eight patients (9%) withdrew due to adverse events, and 44 patients (8%) withdrew due to lack of efficacy. The most common adverse events were dizziness and somnolence, the authors note.

"Treatments for fibromyalgia are limited," Dr. Crofford told Medscape, "and pregabalin represents another treatment option compared to tricyclic antidepressants and serotonin reuptake inhibitors, which have also been shown to be useful in smaller studies," she said.

According to Dr. Crofford, within the next year, an application will be filed for approval for neuropathic pain and anxiety indications in the U.S. and in Europe, and "then there will have to be other studies with respect to fibromyalgia," she said.

"This is a very important study with robust results over a long follow-up," session moderator Laurence Bradley, PhD, from the University of Alabama, Birmingham, told Medscape. "Most of the studies for fibromyalgia pain have produced very modest results," he added.

Also presented at the session were three studies on the efficacy and safety of cyclobenzaprine, tizanidine, and methylphenidate in patients with fibromyalgia. Another study suggested that multinutrient supplementation had no effect on fibromyalgia symptoms.

ACR 66th Annual Meeting: Abstract 1653. Presented Oct. 29, 2002.

Reviewed by Gary D. Vogin, MD

Emma Hitt, PhD, is a freelance writer for Medscape.

Related Links
Conference Coverage

66th Annual Scientific Meeting of the American College of Rheumatology
External Links

Newsbeat - News From the 66th ACR




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