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Lupus
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Posted 8/24/2009 9:37 PM (GMT 0)
My hubby has been on Lyrica for week now and he is still having alot of pain in his joints and still feels like he has the flu all the time, still tingling from head to toe also...the lyrica seems to help for a while, but after he takes it it makes him feel jumpy inside for a couple of hours.  He has also had tight chest sometimes.  I know he has not been diagnosed with lupus yet, and i know that being in the sun is bad for lupus, but his job requires him to be outside 2-3 days a week and he also has a kinda high stress job.  I don't know what to do for him I feel so helpless and bad that he always feels terrible.  He says he could deal with the pain if the flu symptoms would go away but I tell him he should not be in pain.  He stopped taking loratab a few weeks ago and I don't know what to do to help him while we wait for his rhuemy apt which is not until 9/19.

Oh does anyone have any suggestions....in short the 1st rhuemy he went to said he did not have lupus....we went to a 2nd rhuemy and took the blood test results from the 1st rhuemy with us he said it looks like lupus....I want to go back to the 1st rhuemy and ask her why she said he deffinetley does not have lupus but I don't want to pay her to clarify her diagnosis....any ideas on what I  should do?  Oh and she is suppose to be the BEST Rhuemy in the valley????

Thanks for your help

cookiemoster1

Posted 8/24/2009 9:54 PM (GMT 0)
Hey cookie, Sorry to hear he is still feeling that way. As you may remember I too started the Lyrica about the same time as he did. The only difference i believe is i take mine at night. (per the rhumy doc). Do you think that would help the flu symptoms? As for the pain. I too still have pain, But the muscle pain is a bit better. But i still have the tingles in the arms and legs and my lumbar still screams most of the time. I don't know what they will do on the next appt. But I will keep you posted as i hope to hear what the will do for your hubby confused

Just let him know i too am so scared of this maybe Lupus issue. Also, they said i may have the Aklydosing Spondilosis. (i think thats how you spell it) Just have to wait to see what the blood test keep revealing i guess. So many of them give you the same results. Hang in there! I know i am trying too also rolleyes

Stay strong; Laura wink
Posted 8/24/2009 10:15 PM (GMT 0)
Hi gonuts....yes I remember you started lyrica also, he is taking 50 mg 3 times a day. It seems to help his joint pain at times and the tingling too....maybe it will just take a little longer to kick in all the way....but for the most part he feels aweful :( I am glad yours is helping somewhat at least it is a small move in the right direction :). when is your next doc apt? will you find out your results at this time?
You hang in there too Laura and we will talk soon!!
cookie
Posted 8/25/2009 5:11 PM (GMT 0)
Hey cookie, If you don't mind my asking, What is your husbands age? Just so you both know, I am too having major leg and arm pain. I just tried to dust, with one of those things that are the easiest to use, but just doing that and standing my legs were burning and tingling and my feet are numb. My arms feel that way when i go to bed, that's why i use another pillow to prop one arm on that seems to help a bit. I he having numbness in his feet and hands at all. Just curious confused

Thanks cookie, Your really a wonderful person and i really appreciate all of your feedback. wink cry

I am in a mixed emotion: OH, my next appt sept 16th, I think their giving me a break. My PA. is leaving, so she is letting me go to the new Rhuemy Doc. She said he is smart and not bad to look at either. shocked He's to young and he is married. But i guess looking don't hurt. lol turn

Well, I'll be looking for your husbands PROGRESS. He will get better, Im praying for him. I has to work. :-) Laura :-)
Posted 8/25/2009 9:03 PM (GMT 0)
Hi gonuts....he is 46.....I understand what you are talking about he patted his baby girls bottom the other night to put her to sleep and he said he could hardly move his hand after.....just from patting her butt cry   I feel for you soooo much....I have faith that we will both and get this figured out and you guys will feel much better soon.  He does get numb hands and feet at times and sometimes when he sits to long his upper leg gets numb also.

Well thank you gonuts tongue   you are wonderful too!! thanks for all your help and kind words!!

His apt is on the 16th too lol I was wrong bout the 19th.....a whole 3 days earlier lol

Lol bout your new rhuemy.....

Hey do you mind me asking what part of the world you live in?  We live in AZ

Talk soon and praying for you!

cookie

Posted 8/25/2009 10:13 PM (GMT 0)
I guess I should tell u that I am a pharm tech. Lyrica is for fibromyalgia and only is going to help with the muscle pain. It does nothing for the pain caused by Lupus. He is going to go on anti-inflammatory and maybe methroxate. The dr may put him on Lortab or something in the class. Stress is very big trigger for Lupus. When your husband is outside does he get a rash on his nose or cheeks? or just rash on body? U usually just do not have Lupus. Lupus is a doorway to other chronic illnesses.
Posted 8/25/2009 10:28 PM (GMT 0)
Hi spangie, thanks for the info....i was aware that lyrica was to treat fibro, but I was under the impression that it would also help with the pain he is having??? I know it won't help with the flu symptoms and so on. He has not yet been diagnosed, they just think it may be lupus??? I do know his ana came back 1:40 and his double strand ana came back at 15 all other blood work and tests came back normal.
The sun seems to effect him somewhat, but he does not get any rashes at this point. Thanks for your help and any more advice would be greatly appreciated.
cookie
Posted 8/25/2009 10:29 PM (GMT 0)
Hi cookie,

I take a higher dose of lyrica once daily, at night. When I first started taking it, though, I had the worst case of the shakes for DAYS and felt like I was going to crawl out of my skin . . . It took a while to get used to it and I didn't realize how much it helped for nerve pain until I stopped taking it for a while. Not gonna do that again ;) Lyrica has recently been approved for fibro pain, but was previously approved for peripheral neuropathy caused by diabetes (I take it for peripheral neuropathy caused by chronically pinched nerves in my back - I have tried multiple other things, this is the only one that works), but is actually an anti-seizure med by nature that has the beneficial side effect of pain/numbness/tingling relief for some people. I used to have chronic numbness in my calves/ankles/feet/toes along with the stabbing, burning awfulness that goes along with nerve malfunction until I started taking it and got on a dose that works for me. Lyrica is not for everyone, though - many people report taking it with no relief while others (like myself) love their lyrica ;)

I hope the best for your husband and I hope you get the answers you are looking for soon!
Posted 8/25/2009 11:04 PM (GMT 0)
Hi alienwife,
Thanks for your comments!! my hubby gets that feeling like his insides are crawling and jumpy also....he got it sometimes before he took lyrica tho. but he says he feels that way for a couple of hours after he takes it. I hope it does help him it has only been a little over a week that he has been on it and it seems to help a little here and there so hopeful that it will help more and more each day.
I am so glad it is helping you, that is great news.
Thanks again for your help!
cookiemoster1
Posted 8/26/2009 1:58 AM (GMT 0)
Hey cookie, I am from New York, Unfortunately, far away from you guys. cry tongue I too am 46, i think we said this back a few post or so now that i think about it . It's that fibro fog, gets ya every time!! shocked

Anyway, it's funny how our dx's ,appts and drugs sound so much alike. Eventually, things will change for both of us..he is so lucky to have you cookie, my husband is an idiot. So mean today. I was in tears. He just don't get it. I don't think he ever will. He had the whole house up in arms over a stupid strainer for the tub drain... and miss understood what my 24 yr old said about it. ( from previous marriage).. I don't know how much more of him i can take! cry

I just keep on smiling, keep on joking, keep on keepin on. It's all i can do to stay sane any more with him eyes

Well, i'll read ya in the posts!! Hope hubby had a good nights rest and a good day too!! wink

Take care, post later Laura :-)
Posted 8/26/2009 3:49 AM (GMT 0)
Hello gonuts, sorry to hear about things with you and your husband.....is he supportive of what you have going on with you? (if I am overstepping let me know) Hope things get better for you guys!! I am hear if you need to vent.

At least you have a positive attitude......definetly sounds like your glass is 1/2 full and that is a good thing......keep it that way......they say laughing is the best medacine!!?

He has had a really bad few days :( :( thanks for the sweet words.....I think I am supportive of him and what is going on he always tells me I am so I hope it's true. I just feel so bad for him.....and as I have said many times i feel soooo helpless....I know we will figure it out and he will feel better I just don't understand why he (and all these others) have to be dealing with all this pain and suffering :( it makes me very sad. anyway I guess all we can do is keep on trucking and pursue it head on until we figure it out.
Talk soon and take care, Yvonne
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