fibromyalgia

[LauraAnn630]

I went to my doctor and asked about lyrica. He said everyone he has put on lyrica has said its not working.

Anyone try it? Is it helping you? What else are you doing for fibro?

TIA

 

[SueM in MN]

I'm going to move this to the disABILITIES Community Board where it will be more on topic. (The board it was on is the disABILITIES Board that is more for WDW questions).

 

[dyna]

I asked about getting DD on it when her cymbalta stopped working her Fibro specialist said. NO that lyrica causes weight gain of like about 1/4 to 1/3 of your body weight which was not an option for DD.

I do have a cousin with Fibro who a couple years ago was really liking the lyrica but I haven't talked to her about it for awhile. I did notice tho the last couple of times I've seen her that she has gained a lot of weight she like my own DD was not exactly fat but she is now. OOPS

 

[sanibelsettler]

I put on about 15 lbs. It stinks, but the pain is much more tolerable, and I am sleeping better because of it.

 

[Momelie]

I'm doing very well on Lyrica. No significant weight gain, but then I'm also on Byetta which is usually a weight loss drug, so maybe the two are balancing out with me.

I also make sure to exercise at least 5 times a week, it really does keep the symptoms down. I do my exercises in the water, and follow with walking laps in the pool, since my fibro is secondary to an auto immune arthritis and dry land exercising is just not an option - I'd be writhing with pain for a week, LOL! (I speak from experience)

 

[PatsMom]

I started the Lyrica for neuropathy, not fibro, but my experience was not positive. I had a fairly significant weight gain even though I am on Byetta at a higher than standard dosage. My endocrinologist and I decided together that the pain relief was not worth the extra weight since it made it much more difficult to control the diabetes. I went back to Vicodin/Darvocet at night and just toughing it out during the day.

But everyone's experience is different and everyone has different side effects. The Byetta dosage I am on would make many extremely nauseous and it doesn't really bother me. I'd say give the drug a try and see if it helps you.

 

[ireland_nicole]

I tried lyrica, but had to stop due to nausea and dizzyness. I just didn't feel right at all, and it wasn't helping my pain level. But I think it works well for others.

 

[LauraAnn630]

Guess we just have to live with it. Im so glad summer is coming. I cant take the cold! Good luck to all of you!

 

[ireland_nicole]

I know what you mean, that was a big factor in our decision to move to Texas; fwiw, what's helped the most for me has been regular chiropractic care, good nutrition, WBV, and aquatic based exercises in a hot tub (regular pools are way too cold, my muscles spasm) plus massage every two weeks. Don't know if it helps anyone else, but that's been the best for me so far.

Of course, laying on a hammock with a nice frothy drink never hurts either...

 

[Brightsy]

I was on lyrica for a bit, too. Not for fibro, but nerve damage related pain from foot surgery. I gained 20 lbs. while on it. I also had another icky side effect. Yeah, my foot felt better, lots better, but the rest of my body hurt all the time. I felt like I had gotten hit by a truck and was covered in bruises. It was not fun.

 

[DizNee Luver]

I'm new to this side of the boards (usually you will find me hanging out in the Disneyland side).
I have fibro & was diagnosed about 7 yrs ago. They didn't really have anything at that time & was put on a prescription cocktail of valium, muscle relaxants & a high blood pressure pill (don't have BP problems, but they found it helped fibro patients sleep)....... problem was, I was a walking pharmacy & felt blah all the time.
We moved from the town we were in & it took 2 years to find a new doctor (partly because we didn't have health insurance). So I ended up doing a "study" & felt the best I had in years. But as you all know, studies end & so does the medication.
My doctor tried me on Lyrica & one other one, but neither did a thing for me. I find this to be very frustrating (as I'm sure you all do). So he said, I really can't help at this point........ ok, thanx I guess???

So for the past year I've been on nothing. I hurt all the time, I have trouble sleeping...but have lost 40 lbs getting off all the meds. (which I really needed to lose & could afford to lose more). I will say that with the weight loss, it has helped with the back pain.

My question for you all is: if medications aren't working....what else can we do to make the day tolerable?

Any & all suggestions welcome......I'm willing to try almost anything at this point!!! PS: we no longer have health insurance, so going to the doctor to get meds is totally out.

Thanks in advance!!

 

[locolala]

I don't have fibro, but I have chronic low back pain due to an injury that happened many years ago. I take tramadol on a daily basis to prevent the pain, then I can dose again to help with it. If the pain gets extremely bad, I have dilauded that I'll take (and the pass out for 6 hours). I make sure to not be on my feet the entire time I'm at a park. I see shows, eat at restraunts, or just plop my booty down and people watch. I'm actually starting a pain study on the 15th which uses Botox to help with low back pain, so hopefully that will work and it will eventually make it into mainstream medicine.

 

[DizNee Luver]

I don't have fibro, but I have chronic low back pain due to an injury that happened many years ago. I take tramadol on a daily basis to prevent the pain, then I can dose again to help with it. If the pain gets extremely bad, I have dilauded that I'll take (and the pass out for 6 hours). I make sure to not be on my feet the entire time I'm at a park. I see shows, eat at restraunts, or just plop my booty down and people watch. I'm actually starting a pain study on the 15th which uses Botox to help with low back pain, so hopefully that will work and it will eventually make it into mainstream medicine.

Good luck on the study!!!! I hope it brings some relief for you.

I'm like you, have to stop & drop during the day. Usually I overdo the first day & then pay for it the rest of the trip. I've also learned I don't do certain rides after a 5 day stay at the parks. I'm too tired & my body is definately too tired......makes for a miserable ride (filled with anxiety) & then I hurt all the way to my fingertips.
It's definately a learn as you go deal.

 

[Beccabunny]

I was only on Lyrica for a couple of weeks. I had been in non-stop pain for over 20 years. I had not had one pain-free moment in that entire span of time. I could no longer remember what it felt like to not be in pain. Within one week on Lyrica the pain in my right ankle almost completely disappeared. Unfortunately I experienced palpitations, dizziness, and a strange disconnected feeling while on it. I was also hungry all the time and started to gain weight in that short amount of time. I'm not heavy so I probably would've been willing to tolerate some weight gain, but the palpitations and dizziness were too uncomfortable. So it's back to prescription Ibuprofen just to take the edge off the pain. Finally getting into a regular exercise routine has helped. Reducing the stress level in my life helps more than anything, but I'm not very successful at that.

 

[DizNee Luver]

I hear you on the stress!!! Pretty hard to allievate it. I have 4 young kids & 2 young men (also my kids) in my home......kids bring stress with their schedules & day to day living. Then my hubby's been laid off since the first week of December.....so staying afloat keeps the stress levels up.
I know when I have a relaxing day, I feel pretty good the next day.
Exercise is something I need more of.....I chase kids & the vacuum cleaner around & get a bit of walking, but need to actually do some "real" exercises & stretching.
Thanx for the insight on what you've tried!!!

 

[mechurchlady]

I'm new to this side of the boards (usually you will find me hanging out in the Disneyland side).

WELCOME TO DISABLITIES
I am so glad to see you here and my answer for pain and suffering is FOOD. I have celiac not fibromyalgia but for me chocolate sure helps.

Hgus and chocolates
Laurie

 

[DizNee Luver]

WELCOME TO DISABLITIES
I am so glad to see you here and my answer for pain and suffering is FOOD. I have celiac not fibromyalgia but for me chocolate sure helps.

Hgus and chocolates
Laurie

I'm wondering if I have food allergies.....I can hardly eat anything with out stomach issues.......

 

[mechurchlady]

I'm wondering if I have food allergies.....I can hardly eat anything with out stomach issues.......

A food diary shows your reaction to foods. Allergy testing is important so you know what may cause problems. Food allergies can cause gas, belching, stomach pain, headaches, joint pain, dry skin and skin changes like rashes, swelling of the throat, mood changes, thinking process changes, itches, and other things.

Stress also is a major factor in how we deal with food. I think you need the testing and in the mean tie food diary to see how you react like eat cheese and you need a nap or become hyper. I ate ice cream and a few minutes later nearly spilled a glass of water then got hyper and was talking faster and was high as a kite.

 

[MTNest]

When I was diagnosed with fibromyalgia 2 years ago, I had NO energy whatsoever, like when you have the flu, and I ached like I had the flu. The first medicine came from my regular family Dr. who gave me cymbalta. It gave me the energy to get through the Christmas holidays with my college aged children. When we increased the dosage, I now have about 4-5 good hours every day, energy wise. Then I went to an arthritis Dr. who diagnosed me with fibromyalgia on the first visit (I had been from specialist to specialist without a diagnosis or medicines that worked). He gave me Lyrica. Yes, I've gained weight - I was a size 6/8 and now I'm a 10/12, and that's with diet and exercise. The Lyrica works great for me - it helps with the future pain to not come on. However, once I overdue or the fibro. just feels like coming out, then there's nothing I can do but lie down in pain. Thank goodness for ipods!! But I have a friend with fibro. for which Cymbalta and Lyrica do absolutely nothing. I am going by myself to Disney World soon, and thought I'd check out the DISability Board to see if there were any good hints or tips for us fibros. I just wanted to check in with my two cents worth of what has helped me. Good luck to each of you

 

[Windjammermay]

Stress is a big factor for many illnesses. I deal with fibro but I have many other medical issues. I don't take pain meds because I want my head about me and don't like the drowsiness it give. I did the bio-feed back with the pain clinic. It does help to maintain pain but if you are in the middle of a bad attack it doesn't help. Accupuction works very well.

My main pain and energy relief is my electric chair. I can go all day with controlled pain and energy. I can get into more trouble in one day than most and the battery power to do it. With all the activity I can sleep at night. I do take tylanol at night I do hurt but not as much as it was.

With my chair I deal with COPD (astham, bronchitis, emphysema), heart problems, Fibro, back collapse, apnea, no ligaments in my ankles, PBC, osteoperosis, athritis degenative, chronic cystitis, neuropathy, and a few I left out. So, the pain is managed and the energy is better. I even can do my exercises in my chair to keep moving.

You know the pain can drain your energy greatly. It is doable if you don't let it get you down. There are day,yes, but there are better days to come.

It is more than a challange.......it is an adventure.