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Posted 7/5/2013 10:16 PM (GMT 0)
Hi
I am new to this forum,

I live in Victoria, Australia. I have been diagnosed with fybro for a few years now and had tried just to not take much notice of it until this past week or so when the pain and tiredness took me over! I am a counsellor so it has been hard to be tuned in while sitting with waves of pain.... I have just been working too hard. My partner has bone marrow cancer so he has been the sick one, not me!

I am now on three weeks sick leave and have been prescribed lyrica. I wanted to ask others thoughts on this drug. It is not really helping with sleep only really making me very sleepy during the first half of the day and a sense of being disconnected, which is not conducive to Counselling.

The side effects on the net aren't encouraging either. I wonder if I should persist with it and if the sleepiness and disconnected feelings will subside, as I definately couldn't work like this.

Oh yes my gp also told me to wear compression underwear to reduce the pain.

Post Edited By Moderator (Acheybody) : 7/6/2013 10:38:46 PM (GMT-6)

Posted 7/5/2013 10:35 PM (GMT 0)
Hi Elkhart,

Welcome to the fibromyalgia forum!!! I am glad that you found us and joined in. I am sorry for what you are going through though.

Lyrica, I believe, is for the nerve pain you get with fibromyalgia. If it isn't helping you, I would talk to the doctor about something else or another means of dealing with the fibromyalgia pain and fatigue. There are many life style changes that one can make if they don't really want to take medications.

I hope that you find what is right for you. I never tried Lyrica, but I tried Neurontin which is similar and I didn't like it at all.

When you have a chance, check out the first thread on the forum called "fibro 101". It is full of various information that is so helpful. I am sure you will get a lot out of reading there.

I hope that you feel better soon. Do talk to your doctor about the side effects that you are living with. Often the side effects will subside in a couple of weeks, but I am not sure with the lyrica. It could just be your body getting use to the medication.

Best wishes...

Welcome to the forum!!!

Hugs, Karen...
Posted 7/5/2013 10:47 PM (GMT 0)
Compression underwear?! I can't stand anything tight on my body. My skin's too sensitive to the touch.
Posted 7/6/2013 1:07 PM (GMT 0)
Hi I am new here. I have to agree compression underwear when you can't stand anything touching your body. Has anyone else ever tried it?
I also take a good omega (high dose), grape seed and for other people I know they have good luck with COQ10
Posted 7/6/2013 5:11 PM (GMT 0)
Welcome Elkhart and Junnie!

Elkhart-How long have you been on Lyrica? It is always good to give a new drug time to work, and get the body used to it. That being said, some drugs work well and others do not. The "Fibro" drugs seem to be really like that-very individual in their outcomes.

When are you taking the drug? If you get sleepy, can you take it in the evening when there is less need to be awake?

There is no magic cure-all, sadly. Sometimes, you do have to choose what you are willing t o live with: pain, sensitivity, disconnectedness, sleepiness.

Never heard the compression undies before. Interesting.

Junnie-I did CoQ10 when first diagnosed. It's another supplement that can be helpful to increase energy for some people. I noticed no significant difference, so I stopped using it after a few years.
Posted 7/6/2013 10:44 PM (GMT 0)
I have a friend who has had fibro about 20 yr.

She has used Lyrica for at least 5 yr & I know she told me it took several weeks for it to really get in her system. She said she is able to work because she can take it.

I know several other people who take it & are pleased with the results.

I tried it.. After first pill I had excellent pain relief but side effects hit.. swelling & discoloration.. looked like I had on pink fuzzy knee socks!! I could not take a second dose..
Posted 7/7/2013 4:38 AM (GMT 0)
Hi, Elkhart! I'm glad you found your way here, too. As Karen said, the thread called Fibro 101 is a very good one to check out. Hope you don't mind - I'm going to give your thread title an addition, so people will know you're a newbie.

Junnie, hi!....why don't you start a new thread, with something in your title indicating you're also a new member? THat way, people will know to greet you.

I was on Lyrica for a few weeks, and it might have helped with the pain a little, but it also made me feel like there was more pressure in my head and chest - kind of hard to explain - so I quit. My sister-in-law recently had a horrible experience with it...she said she could hear her own voice in her head telling her what she was doing, as if she was outside herself (maybe that's a kind of disconnection...is that what you're feeling?) It messed up her sleep pattern too...and it took a good month after she stopped to feel better.

It's amazing how absolutely different we all are in what helps us and what we can tolerate. I'm now on Gabapentin for nerve pain, which is very similar, and I still have a little of the chest feeling, but not nearly as much.

As for the compression underwear, I can't even imagine wearing that! I had spine surgery last year, and my surgeon wanted me to wear compression socks for awhile after....I tried the loosest they had, and could not hack them! Awful! I'm another one who can't stand tight anything.

I hope you'll (both) keep posting - we are all here to help eachother.

Debbie
Posted 7/7/2013 5:14 AM (GMT 0)
I took Lyrica for a couple of years, and it did help with pain. However, I finally stopped taking it due to swelling in my hands and feet and weight gain. I also felt groggy while taking it. The withdrawals from this med can be very bad for some people, and I noticed that my pain levels were much worse during this time than they had been before I had begun taking it. This lasted for about 3 months. At times, the pain was so bad that I very nearly started taking it again. My husband also used to take it, and he had the same experience when he stopped.

Although I still have pain, I find that I feel much better if I take supplements such as D3, Calcium, and Magnesium. I also usually take a couple of Tylenol before bedtime. Fatigue is always much more of an issue for me, and I take B12 which helps a bit. I also find that my pain is much worse if I sit for long periods of time, so I try to get up and move around every 20 to 30 minutes for awhile. Getting regular exercise is also important, and I find that water exercise really helps, or even just walking on a daily basis is good.
Posted 7/7/2013 2:44 PM (GMT 0)
Thanks for all the replies everyone, I was hesitant to send out, hate to complain I guess, which is probably what got me to feelings so run down and awful. It is helpful to hear other people's experiences... The fibro fog! I was wondering if I was having beginning of dementia...
I am getting used to the lyrica, but worried about weight gain, I just went off beta blockers for migrane prevetion due to that unwelcome side effect. It seems most drugs have side effects anyway.

Re the undies, I can tolerate the top as it seems to help with my shoulder pain, but not my legs, they feel too hot.

Is waking very early... Like 3am also a symptom of fibro? It is a real nuisance
Posted 7/8/2013 1:25 AM (GMT 0)
Re: compression underwear..

I wore a camisole type top (to a wedding) because I was familiar with the venue & knew I could take it off if it bothered me.. it didn't.. only thing I can figure is that nothing was rubbing against my skin..

Oddly enough I could not tolerate compression knee socks purchased for traveling (while flying)

I am very sensitive to textures.. have some slipper socks with non-skid pattern on bottom that I could not tolerate to take even a few steps while wearing. Even patterned socks annoy me. If my sheets wrinkle under me I wake up.
Posted 7/8/2013 11:32 AM (GMT 0)
Hey there!!!

I wanted to chime in on this as my Dr in Perth started me on Lyrica in January. I started off on 75mg twice daily and WOW did I notice a difference in my pains. That being said I felt like a zombie during the day time. My dose has since increased to 150mg twice a day, and I have to say it's kind of hard to function "normally". You do get used to it over time, but the "groggy" "sedated" feeling doesn't go away fully.

Now we're into July I have commenced on Cymbalta along with the Lyrica and I'm finding that helps more with my pains. I'm never completely pain free, but I'm much better than I was.

Hang in there :)
Posted 7/8/2013 2:24 PM (GMT 0)
Hi Elkhart, I am new to the forum also.

My doctor gave me Lyricia, I have to say it did help with the pain but I felt so spaced out I could not cope. When I looked side to side it was like I had the jitters or was a Thunderbird (bit funny, I know!).

Anyway had much better results on Cymbalta, but what works for one person doesn't mean it will work for another.

I personally would like to be free of pain withou drugs but my rheumo says that is because I am a control freak! Nothing like paying for a professional opinion.

All the best.
Posted 7/9/2013 12:34 AM (GMT 0)
Hello,
I was on Lyrica for two years and found the side effects to be horrific. My doctor told me that the effects would subside and go away, but for me they did not. I finally got fed up and weaned myself off of it. Feel a whole lot better off of Lyrica than on it.

Keribethmable
Posted 7/10/2013 7:23 PM (GMT 0)
Hi again
This forum has been very helpful for me through reading other people's experiences with fibro.

I gave up on the lyrica after six days as it didn't help with the sleep which my gp was hoping it would, and for me the side effects were worse than the slight pain relief it provided. And looking over previous comments and threads it would seem it is not what the drug companies say it can be for fibro. So I am glad I posted the question about the lyrica, as it helped me to decide.

I take sifrol for restless legs and endep 5mg for pain at night and that seems to get me through to 4am... Not sure if it is refreshing sleep though.

This forum is helping me to take fibro more seriously as this current flare has laid me low and I do need to get back to work at the end of next week and I will do things a bit differently to hopefully prevent another flare up as it has been debilitating, and disheartening.
Posted 7/10/2013 9:42 PM (GMT 0)
Elkhart,

I hate to recommend more drugs, as you just had a less-than-stellar experience with a new one, but - you asked about waking up at 3 am....I used to do that every night like clockwork, when my kids were little. That's why, when I was diagnosed, my new doctor had me try something for sleep. In my case, it was Nortriptyline, an older tricyclic antidepressant. It really did help - still does.

Hang in there! It is good to read other people's experiences, isn't it? I was SO glad to find this forum, and people who not only believed me, but actually understood!

Debbie
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