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my hubby needs help

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Fibromyalgia
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Posted 2/12/2010 1:48 AM (GMT 0)
Hi, I have not written in a while.

An update on my hubby he has been to 4 rheumys and the mayo clinic, the dr at Mayo thinks he has fibro.  Have not had any luck finding a good rheumy tho confused   Anyway he has been off Lyrica for about a week it did help with fatigue somewhat and pain a little bit, his family doc wants him to try Savella.  I have read mixed reviews about it and not sure if he should try it or not.  Alot of the reviews say it causes high blood pressure and racing heart??? can anyone give any feedback on there experiecne with savella.  Any help would be greatly appreciated. 

We don't know what to do he feels terrible ALL the time, he never feels normal and all his joints hurt along with burning and tingling, dizziness too.  He goes to work and usually comes home eats dinner and has to go lay down...he can't hardly play with his 2 little girls 2 and 3 years old.  I feel so terrible for him and I feel helpless.  I just want my hubby to feel better!

Oh when he was on the Lyrica it caused him to have eye problems since he has quit it has gone back to normal so I don't know if even going back on the lyrica is an option?

Again any feedback on the Savella would be great.

Thanks again

cookie moster1

Posted 2/12/2010 4:16 PM (GMT 0)
Hi there,

I can't help you with the Savella, I have never taken it, or lyraca or cymbalta. But I wanted to say that I am sorry for what your husband is going through. I hope that the savella helps him and that he feels better. I take adderall for fatigue. It might be something that he would like to talk to his doctor about. It really helps.

Best wishes to you.

Hugs, Karen
Posted 2/12/2010 4:41 PM (GMT 0)
Hi, I have been on Savella since July of last year. My blood pressure along with my
resting heart rate were high before I started taking it. I do take a blood pressure med.
My rheumy gave me 2 2-week titratration packs so that my body was able to get a
gradual dose increase. I now take 50 mgs 2x daily. The gradual increase helps.

I am one of the lucky ones who is able to tolerate Savella with no bad side effects.
Before the Savella I tried Cymbalta and my body couldn't tolerate it.

We all tolerate meds differently, so you really don't know until it is tried.

I'm so sorry your hubby is going through this. Hoping he will get a dx soon and that he
will find a med that helps him. Wishing you both the best!

Hugs, Robin
Posted 2/18/2010 9:32 PM (GMT 0)
Thank you all for your replies
Posted 2/19/2010 3:31 AM (GMT 0)
eyes rolleyes cool hi cookiemonster! i have been on lyrica since sept. 1 with little relief. i'm going to new dr tomorrow and i do pray he can prescribe something that will help. did your hubby have any bad effects after stopping lyrica? my sister in law told me the dr put her on savella and she says it is helping her fibro. she was happy pretty much to have a dr finally believe something is wrong with her other than just depression (which in itself is bad enough..i have taken antidepressants for more than 15 yrs.). oh also i talked to the pharmacist yesterday and he talked very favorable about savella (his customers' opinions). i am so sorry your husband has to have this MONSTER! i just hate hurting all the time and the nerve pain is soooo ba. i actually can barely remember what it was like before i had this crud. take care and hope he feels better. i don't care what the dr prescribes i'll give it a try! Donna
Posted 2/19/2010 6:41 AM (GMT 0)
Hi cookie,

I'm sorry your hubby is so miserable and it does seem that he's not getting the medical care he really needs. When doctors are not up to date on things like fibro it's makes life difficult. Savella is the "latest and greatest"...hahahaaa...and the reason so many doctors are pushing it is because it's new and the drug companies are pushing it. They visit the doc, hand out samples and tell them how great the newest medicine is and doctors start writing prescriptions whether it's warranted or not some times.

What research and trials have show with Lyrica and Cymbalta is they work on about 50-60% of the people who take it. And of those the pain relief is somewhere from modest to OK for a few. But by the time you've taken it for about 2 years it stops working. I had terrible reactions to both of those and no way will I try the Savella.

I would suggest your hubby get himself to the closest university/teaching hospital and get a doctor who can get to the bottom of what's really wrong. If it's fibro there is no cure but there are ways to help manage the pain and give you some quality back to your life. But unless you have a good doctor it's not likely going to happen. You have to push and advocate for yourself most often. In the Chronic Pain 101 thread there's a link to university hospitals around the globe. I'll put it here so you won't have to look for it. I do hope it helps.

Chutz

en.wikipedia.org/wiki/List_of_university_hospitals
Posted 2/19/2010 2:26 PM (GMT 0)
cookie,

I am a 37 year-old man that has had Fibro for 5 years now.

These are my experiences:

the fatigue becomes more manageable as you grow accustomed to it. You husband will find a way to maximize his energy and minimize the overwhelming fatigue.

I started using vitamins to increase my energy and awareness a year ago and feel it has been successful.

I took Lyrica for a while but it caused too much drowsiness and "fog" so I quit it (without any withdrawal).

I am currently on Cymbalta and woul dlike to quit it...but it has VERY nasty withdrawal that I have not the time to deal with right now.

The pain will not get better, so he must change his attitude towards it. He needs to accept that it will always be there in varying degrees and learn what he can do and when he can do it. I know I will pay a price (pain) for certain activities, so it becomes a question of whether the activity is worth a day or two of increased pain.

 

Posted 2/19/2010 7:00 PM (GMT 0)
Hi Donna,
No my husband did not have any side effects from going off of Lyrica....he did it over about a week of gradually decreasing his dosage. He was taking 50mg in morning and 50 mg at bedtime. Thank you so much for your kind words and input!! :) I hope you feel better soon as well, I think he is going to try the savella this weekend. I will let you know how it goes for him. keep me posted on how it goes for you when you go off of Lyrica.

Thanks for the website info chutz :)

hugs,
cookiemoster1
Posted 2/22/2010 9:55 PM (GMT 0)
Hi Chutz,
I checked out the site you attached for university hospitals....unfortionatly there is not any in AZ....everywhere else but here....oh well, thanks for you help anyway!
cookiemoster1
Posted 2/22/2010 10:34 PM (GMT 0)
hi t here. sorry to hear that your hubby is not feeling well. I tried neurontin and lyrica- both made me suicidal. I tried savella and it made me so sick I landed in the hospital. I take cymbalta now and it helps with the depression and a little with the pain. not the best pain med for me but I also wouldnt want to come off to find out!

Remember what is good or bad for me maybe different for someone else. I just thought I would share my experience. Fentanyl patches and oxycodone work the best for me.

I also think that the supplements magnesium, B12, and tumeric are best for pain and fatigue,

I take b12 and magnesium in an Muscle injection they are very very cheap and easy to do. at least take the oral vitamin. I am not a doctor though so check with them
Posted 2/22/2010 10:34 PM (GMT 0)
one more thing.... make sure he gets tested for lyme disease.
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