Lyrica - weight gain? tiredness?

[beaujolais]

Does anyone have any experience with Lyrica.

I just started it for fibromyalgia.

Has it made you gain weight? Tiredness?

Thanks.

 

[Linda W]

Yes, I took it once and went off of it. Made me gain weight and I hated it.

 

[LostSapphire]

Hi Sonoma

I believe we''ve talked a bit about Lyrica in the monster thread.

I didn''t like it, but mostly because it was ineffective for my trigeminal neuralgia. It didn''t make me as "stupid" as the tegratol, but I did feel bloated and slow and puffy while on it.....can''t say for sure if that was because of the Lyrica or the stress-related ice cream binges, however...

LS

 

[Linda W]

LS,

That is exactly how it made me feel too, puffy. I was on it for nerve pain too, I should have said that, sorry. It made my face bloated too. I looked like a chipmunk.

 

[beaujolais]

--- bloated and slow and puffy ----

Oh, how well said.

----

Thanks LS & Linda.

LS, last I knew of you were feeling quite well. I so hope that is still the case.

And, thanks Linda. Precisely.

I finally dug in, myself, and started Lyrica. It''s been interesting. Small, small, small dose. First few days - migraine & vomiting. So, I cut it back even more. Now, - tingly hands and feet & such. This is o.k, though, as I''ve also had a pretty severe plantar fasciatis (chronically sore foot despite multiple cortisone injections) for over a year now. It''s pretty much traded in the painful foot for a tingly foot. That''s fine and pretty wonderful, in fact. I do like the results of this drug, for the most part but I HATE THE PUFFY. I figure the tiredness should go away as I get used to it but I can''t afford to/refuse to gain weight. I keep pressing my fingertips into different parts of my body and am not fond of the "spongy" feeling that is now me.

Anyway, sorry for the ramble and thanks for listening. At least I know I''m not alone in the puffiness on this one.

 

[Linda W]

SC, for your foot problem, have you tried inserts in your shoes??? I had the same problem in my left foot. I could hardly walk, I had a special insert made for my tennis shoes. Oh boy did it help. I was told never to wear sandals, but I do in summer.... until the pain starts to come back... then back to the tennis shoes with the insert.

 

[beaujolais]

Hi Linda. Sure do. I'm tried most of the "artilery" against this !*&^%$ foot (left is much worse than the right).

I have one pair of custom orthotics and lots of Spenco hard arch supports. Sometimes I think I like the Spenco hard arch supports better as you can boil them and bend them up as high as you want. The customs need to back to the manufacturer to be bent up again.

I'm glad it's worked for you. Do you have high arches? High arches are prone to plantar fasciatis.

I also like these shoes/sneakers and wear them most of the time:

http://www.planetshoes.com/brands.asp?bc=Earth

The negative heel technology stretches out the plantar fascia & achilles tendon, which helps people with pf. My podiatrist likes these and Danskos for her pf patients. I find the Danskos too unstable, prone to tipping sideways.

I also always wear sneakers in the house, even right out of the shower. If I go barefoot for more than a few steps, the foot gets and stays upset. You too?

Oh, I hate having an uncooperative body.

 

[Linda W]

SC, I have low arches and my ankles turn in, they always have.

Mine really flares up in summer, as I always go back to wearing sandals when I shouldn''t. My feet get so darn hot though. UGH.

I have found that Reebok work the best for me. I have tried all of them and these are the only ones that work best for my insert. Yes, I have the hard one that was custom made. I tried the soft ones and they didn''t work at all. The custom made one fits perfectly and my foot, feels snug as a bug, in a rug.

When I lie in bed, I am always stretching my foot up.

They have a special sock to wear at night, have you ever heard of that??? It is supposed to keep your foot in the upright position all night.

 

[LostSapphire]

Date: 6/11/2009 10:16:12 PM
Author: sonomacounty
--- bloated and slow and puffy ----

Oh, how well said.

----

Thanks LS & Linda.

LS, last I knew of you were feeling quite well. I so hope that is still the case.

And, thanks Linda. Precisely.

I finally dug in, myself, and started Lyrica. It''s been interesting. Small, small, small dose. First few days - migraine & vomiting. So, I cut it back even more. Now, - tingly hands and feet & such. This is o.k, though, as I''ve also had a pretty severe plantar fasciatis (chronically sore foot despite multiple cortisone injections) for over a year now. It''s pretty much traded in the painful foot for a tingly foot. That''s fine and pretty wonderful, in fact. I do like the results of this drug, for the most part but I HATE THE PUFFY. I figure the tiredness should go away as I get used to it but I can''t afford to/refuse to gain weight. I keep pressing my fingertips into different parts of my body and am not fond of the ''spongy'' feeling that is now me.

Anyway, sorry for the ramble and thanks for listening. At least I know I''m not alone in the puffiness on this one.

Hey Sonoma.

Yes, I''m doing good, thanks for asking!

Your note about tingly hands and feet triggered a memory: i got that too, but it was like electric-shock things (which to make a long story short, is the "typical" type of trigeminal neuralgia: electric shocks in the fact). Mine was atypical so my pain was different than that. Anyways, when I was transitioning over to the Lyrica, I had about 2 weeks of horrible shock like stuff in my face, and the sensation of an icepick in my eye. It was hard to take but did eventually settle down.

So perhaps the Lyrica affects nerves in a different way, and for you it''s your feet and hands...?

Sorry about the bloated/slow/puffy....some of that will settle down so give it a chance.

LS

p.s. HI LINDA!

 

[gemgirl]

Date: 6/12/2009 1:33:36 AM
Author: Linda W
SC, I have low arches and my ankles turn in, they always have.

Mine really flares up in summer, as I always go back to wearing sandals when I shouldn''t. My feet get so darn hot though. UGH.

I have found that Reebok work the best for me. I have tried all of them and these are the only ones that work best for my insert. Yes, I have the hard one that was custom made. I tried the soft ones and they didn''t work at all. The custom made one fits perfectly and my foot, feels snug as a bug, in a rug.

When I lie in bed, I am always stretching my foot up.

They have a special sock to wear at night, have you ever heard of that??? It is supposed to keep your foot in the upright position all night.

Linda, I just saw that foot support thingy in the "Footsmart" catalogue (which I already threw away, so I can''t give you more info) but I suppose you''ll find it on the Footsmart website too. Footsmart has some of the most interesting supports and braces and hot & cold therapy packs etc.

sonoma, I''ve had severe FM ( for the last fifteen years) and I was offered Lyrica but I''m not interested in taking anything else. I''ve been on small doses of Flexeril for the last year and a half, and it works if taken in conjunction with Tylenol or Motrin or Day Pro. Have you tried Flexeril? They came out with a tiny 5mg. dose that doesn''t make you tired or loopy but still helps to ease the muscle pain.

 

[Linda W]

HI LS

gemgirl: I think I get those catalogs every so often. I will have to check and see next time, or look on line. Thank you for telling me about it.

 

[beaujolais]

GemGirl: You too ! So sorry. It's a %#@*! , isn't it? Flexeril makes me sooo tired, even in tiny doses. I'm glad it works for you, though. My favorite muscle relaxer is Zanaflex, most effective with least tiredness.

---
Linda - Oh, so low arches. My podiatrist says either low or high arches cause problems. Footsmart has some sandals for people with pf. You may want to look into it.

-- When I lie in bed, I am always stretching my foot up---

Absolutely. The Earth shoes/sneakers do this with their negative heel technology, too.

--They have a special sock to wear at night, have you ever heard of that??? It is supposed to keep your foot in the upright position all night.--

I absolutely know I couldn't sleep like that. Being a true fibro, I have huge sleeping problems and have to take Ambien fairly regularly. Thanks, though, for the idea.

---

LS, so the side effects lessen a bit over time, you say. Great to know. Thanks
Now, how's your jaw/teeth doing?

 

[risingsun]

I did try Lyrica for fibro and it made me feel better. I gained about five pounds, panicked, and stopped. I also took a medical leave from work and the inactivity contributed to the weight gain. One of the problems is that it made me feel "loopy!" I couldn't walk a straight line, but I giggled a lot. I'm considering a low dose to see if it alleviates my symptoms. I'm really feeling pretty ill right now.

ETA: I feel tired all of the time anyway

 

[gemgirl]

Date: 6/12/2009 7:15:47 PM
Author: risingsun
I did try Lyrica for fibro and it made me feel better. I gained about five pounds, panicked, and stopped. I also took a medical leave from work and the inactivity contributed to the weight gain. One of the problems is that it made me feel ''loopy!'' I couldn''t walk a straight line, but I giggled a lot. I''m considering a low dose to see if it alleviates my symptoms. I''m really feeling pretty ill right now.

ETA: I feel tired all of the time anyway

Constant fatigue is a real issue for me too (I have CFIDS also), so I try to stay away from anything that''s going to contribute to loopiness, that hung over feeling or brain fog. On one of my bad days, I''m foggy enough on my own. The possibility of gaining weight didn''t appeal to me either, not even for the possibility of relief from pain. I try so very hard to keep my weight stable, but so many things throw it off.

Two of the best things I have in the house to help my FM are my pocket sized TENS machine and a few really great thera-bead microwavable packs. If you use both of those and keep stretching, walking and moving, it won''t be as bad (unless you''re in a definite new flare brought on by something you can''t control).

 

[gemgirl]

Date: 6/12/2009 12:20:55 PM
Author: Linda W
HI LS

gemgirl: I think I get those catalogs every so often. I will have to check and see next time, or look on line. Thank you for telling me about it.

You''re welcome Linda

. It''s a pretty neat catalogue. They have things I''ve never even thought of before.

 

[gemgirl]

Date: 6/12/2009 4:09:25 PM
Author: sonomacounty
GemGirl: You too ! So sorry. It's a %#@*! , isn't it? Flexeril makes me sooo tired, even in tiny doses. I'm glad it works for you, though. My favorite muscle relaxer is Zanaflex, most effective with least tiredness.

---
Linda - Oh, so low arches. My podiatrist says either low or high arches cause problems. Footsmart has some sandals for people with pf. You may want to look into it.

-- When I lie in bed, I am always stretching my foot up---

Absolutely. The Earth shoes/sneakers do this with their negative heel technology, too.

--They have a special sock to wear at night, have you ever heard of that??? It is supposed to keep your foot in the upright position all night.--

I absolutely know I couldn't sleep like that. Being a true fibro, I have huge sleeping problems and have to take Ambien fairly regularly. Thanks, though, for the idea.

---

LS, so the side effects lessen a bit over time, you say. Great to know. Thanks
Now, how's your jaw/teeth doing?

sonoma, I'm kind of used to it now. I was diagnosed fifteen years ago but have had it for longer. The first few years were the hardest, but if you're patient and listen to your body, you can figure out what works for you and what doesn't. Hot showers help. Hot soaks in the tub are even better. Going to either a chiropractor or a physical therapist for a massage once a week helps even more.

The Flexeril did make me tired in the beginning, but that was when I took the branded sample pack from my neurologist. The generic (which is all my insurance company will pay for) is weaker despite the fact that it's the same dose.

I never had the problems with sleep that most FM sufferers do. (I don't have primary fibromyalgia).

If having FM is new to you, google "Devin Starlanyl" and you'll gets lots of info on FM and CMPS. I used to know and correspond with Dr. Devin when I managed an internet support group for people with all of these illnesses plus some others. She speaks from personal experience, as she is a sufferer herself. Her books helped me to understand all of this when I was new to FM. The prohealth.com website has an article written by Devin about all of the drugs currently in use for FM.

Thanks for the tip on Zanaflex. I'm going to ask my neuro when I see her this month. Nocturnal myoclonus can be a really unnerving PITA!

 

[risingsun]

^^^Thanks for all of the information, gemgirl

 

[beaujolais]

Oh no, not new, Gem Girl. Going into 30 years or so of evil muscle knots & fatigue (fibro). It started when I was like 17 or so. (O.K., so I'm old, yes I am.)

You managed a group ! Great. You are a great resource then.

I've go to the chiro, myofascial release & massage therapist on a regular basis. Have a tens unit, done trigger point injections. Tried accupuncture - that didn't work too well. Did all the "lighter" meds and supplements which barely helped. I've decided it's time for the big guns even if I don't like what it says much in the PDR. Weight, though, is a hard one to compromise. However, I'm liking this med, actually.

CFIDS - ooosh, hard road. So sorry.

Say, I read a great quote on a fibro website, that you all might like. "Realize that your friends won't understand (when you are so often tired/not well)." How true. Do you deal with that, too?

I'll go look for Devin, GG. Thanks.

One thing, I'm finding that it is dying down a bit as I've gotten older. Fibro does that.

I love Ultram for pain. Have you used it? Great when you get the leg knots at night.

Thanks again GG & all.

 

[gemgirl]

Date: 6/13/2009 2:24:43 AM
Author: sonomacounty
Oh no, not new, Gem Girl. Going into 30 years or so of evil muscle knots & fatigue (fibro). It started when I was like 17 or so. (O.K., so I''m old, yes I am.)

You managed a group ! Great. You are a great resource then.

I''ve go to the chiro, myofascial release & massage therapist on a regular basis. Have a tens unit, done trigger point injections. Tried accupuncture - that didn''t work too well. Did all the ''lighter'' meds and supplements which barely helped. I''ve decided it''s time for the big guns even if I don''t like what it says much in the PDR. Weight, though, is a hard one to compromise. However, I''m liking this med, actually.

CFIDS - ooosh, hard road. So sorry.

Say, I read a great quote on a fibro website, that you all might like. ''Realize that your friends won''t understand (when you are so often tired/not well).'' How true. Do you deal with that, too?

I''ll go look for Devin, GG. Thanks.

One thing, I''m finding that it is dying down a bit as I''ve gotten older. Fibro does that.

I love Ultram for pain. Have you used it? Great when you get the leg knots at night.

Thanks again GG & all.

Hi sonoma, I''m sorry I didn''t get back to you. I often lose track of what posts I''ve responded to. That''s bad, I know.

I have found that people don''t understand. Even those closest to me. It''s because we don''t "look" sick. With other illnesses, there are sometimes outward signs that there''s something wrong. With FM, there''s not. When talking to people in person, I sometimes twist my words around over and over again in the same sentence. I have to apologize and explain that I''m brain fogged today and my mouth''s not coordinating with my brain. Although I want to say "things like that they can understand", I really don''t think they do. Trying to hold on to something and have it fall through my fingers, I explain as clutziness. They don''t know that our grip is unpredictable. I have loads of examples, I just embarrasingly explain it as clumsiness. My real problem is when I''m tired, I''m completely out of energy. I sometimes feel too tired to eat and too tired to breathe. Then I have to go and lie down in a quiet room and try to recharge my battery.

I guess I have been successful at managing my symptoms because I''ve been sick for so long and I have shaped my life so that my schedule can revolve around how I am feeling. I do as much as I can when I''m OK. It''s important for me to be personally productive with my time. The times that I''m truly unwell, I just retreat to the quiet of my house. We don''t have any family, so that makes it easier for me in a strange way. It''s a quieter life.

Your FM will hit a definite plateau when you are finished going through menopause. That brought me great relief. I used to walk around every single day with a pain level of 8 to 10, but now I''m at a five/six most of the time and that''s great! Estrogen has everything to do with spiking the pain of FM.

No I haven''t tried Ultram because one of the gals in my group got seriously addicted to it and that bothered me immensely. I saw her go crazy without it and I saw her need more and more as the years wore on. I much prefer natural or holistic means of treating this if I can.

 

[beaujolais]

Thanks Gem.

--- When talking to people in person, I sometimes twist my words around over and over again in the same sentence. ---

I hear you. It may sound funny to some but it does take energy to talk to people.

-- Then I have to go and lie down in a quiet room and try to recharge my battery. --

Yes. If you try to keep going when you can''t do you find, you''ll make mistakes or get clumsy. My line, "I can''t keep going."

-- I guess I have been successful at managing my symptoms because I''ve been sick for so long and I have shaped my life so that my schedule can revolve around how I am feeling. ---

Yes. Do you work full-time also?

-- We don''t have any family, so that makes it easier for me in a strange way. ---

I understand. People will want you to visit them. I can''t keep up with my life, no less visit.

-- Your FM will hit a definite plateau when you are finished going through menopause.---

I do think so. It''s been lessening as I get older.

-- Estrogen has everything to do with spiking the pain of FM. --

One of my Drs. said "It''s a disease of women in their child bearing years."

I guess we all know what medication protocols we can handle and or not. One Ultram a day is a life saver for me. I would not want to take anymore as you can have those funny side effect feelings.

Anyway, thanks for talking and your ideas.

Sonoma