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choctaw4ever
on 6/3/10 8:09 pm - Spokane Valley, WA
Topic: A long time Fibro sufferer
I was finally diagnosed with Fibro at 38 but had it for some time. I was given all the stuff everyone else has been given over the years some affected me worse and some helped for a short time to take and edge off. Nothing and I mean nothing makes you normal. So if your depressed then your not on the right anti depressant. large doses of pain meds are what most people wish for to help. I refused to go that route. getting hooked on pain pills is not an answer. I had my Gastic by pass 5 years ago and felt good with alot of my weight off but I also had knee problems I had both knees replaced 3 years ago this Sept. My legs swell and I move slow I fall and I hurt along with the fibro. I am now almost 54. But give up I won't Most don't understand and husbands boyfriends etc seem to never quite get it. And your baby will not understand. Exercise is so painful, but I will say get to a warm pool and I mean one for therapy or senior citzens and get in and just walk. It helps all the muscles and the heat helps you feel better along with water not putting pressure on your body. You need a good anti depressant it seems and try very hard not to let it control you. I had 3 co workers who had Fibro like me. Most crawl into bed and take high doses of meds and never get out of bed. Laying in bed makes your muscles worse They have to move to get toxins out. I must tell you I live in Idaho now prior to Sunny california. I get snow like crazy and very cold weather. It bugs but I keep socks on and sweats and yes have been known to shop in PJ's a nice acceptance up here. Hot weather makes my arms and leg joints swell and I suffer from muscle spasams daily. I have not worked since I was 38 and was a work aholic. But I raised my kids have 15 plus grandkids and about the same in neices and nephews. I babysit once in a while walk my 4 dogs and make myself get up every day. A therapist once told me when you lay in bed or say I will do it tommorow you just wish your life away a day at a time. So i get up make myself do at least one thing I will enjoy each day so I never can say I lost a day. Everyone has a drug that helps and everyone has had their share of problems with them. You have to find a balance for you. Clonazapin is an antidepressant I have taken since day one. 1 in am 2 at night and Baclofin a strong muscle relaxer which I take the same dose of and on bad days I might take an extra one or two. It helps me. But I have been getting off all the rest, They just work for a short time and then side affects make me worse. I guess what I am saying is you have to make your self get up and fight. i keep saying I am going to get a medical card for marijuanna as i know it will help with sleep and rest but I am not a smoker and the stuff I feared is strong but they teach you to put it in capsules and baked goods etc. Yes they have classes for it. But you have to fight through the pain and get moving some or you will just get worse. THERAPY does help some to get you started massage is a no no it hurts just to be touched. But I will bite my lip so mygrandkids never know they hurt me when they hug me. Feel free to email me at [email protected] if you want to talk. If I can help you get through any of the pain I will try. Sometimes just having a friend who has it can help. marylou
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choctaw4ever
on 6/3/10 8:05 pm, edited 6/3/10 8:15 pm - Spokane Valley, WA
Sanday
on 6/3/10 2:12 pm
Lap Band on 11/16/10 with
Topic: RE: Northwest Ohio Fibro doc? Botox shots?
Do you have a rheumatologist?  If not Dr. T Syed is great.  She has a wonderful bedside manner.
Located in Perrysburg, Ohio.  Also sees patients one day a week in Defiance, Ohio.  Never heard of
the botox for fibro so I can't help you there.  I'm on Elavil for the fibro and it works pretty well.....my chief complaint is the fatigue.  Good luck!  : )
RollTideRoll
on 6/3/10 1:48 pm - Montgomery, AL
Topic: Dr. Mario Alberto Almanza-Reyes
I was just posting this because I've had more people than I thought, write me and let me know how much their sorry and how they are praying. My momma is one of the nicest people out there, I wish that we can individually meet each and every person on this website that are planning on going to Dr. Almanza. I wish I could take you guys through a normal day in my life now that everything has messed up in my life. Going through my last summer as a high school student. I can't have fun... I won't have fun. I want justice to be served!!! I want to save someone's life. Please this is NO JOKE!! I wake up everyday and I think and pray about anybody who's in or going into surgery with Dr. Almanza... I pray for you guys. I don't even know you guys. My mom has been in ICU on a ventilator for 7 days now... my best friend... I can't go see her whenever I want to anymore... visiting hours are precise. My mom won't be able to see the 17th Anniversary of me arriving in this world, because she's too busy going through something that shouldn't have ever happened!!! DOCTORS MAKE MISTAKES... BUT WHAT KIND OF DOCTOR MAKES MISTAKES OVER AND OVER AND OVER AGAIN.. Yes, you might have had a WONDERFUL experience... but listen to the stories people.. just because you were lucky DOES NOT mean that everybody else was. There are many people around the United States and Canada that are dealing with their friends and/or family members DYING with deadly infections, holes in stomachs, esophagus, etc. You guys keep telling your friends to go.... and eventually, you are going to go through what me and my family and plenty other families are going through right now. I'm not trying to harsh Dr. Almanza's "mellow".... I am truly, honestly, and dedicative to preventing as many people from going to this doctor as possible. Please spend the extra money and getting done by someone who is, not only cheap and kind, but dedicated to helping you. Not a doctor who is just going to WHAM BAM over and never see you post-op (to many people). Please PLEASE PLEASE PLEASE..... I am not doing this to get back at Dr. Almanza or anybody that is working over there just because they've done this to my momma. I am doing this to prevent YOU from ever going through something like this. It IS NOT FUN.
Love always and forever,
Miranda
Patricia M.
on 6/3/10 6:22 am - Indio, CA
Topic: RE: Anyone on Savella?
I've been on Savella for a year and never had a problem, I would call my Dr right away and let him know, there might be something that you're have a reaction to. Good luck.
Gina F.
on 6/3/10 4:09 am - Sacrametnto, CA
Topic: RE: Myoclonic Jerks w/ Fibro?
Ya, I have been off the Nortriptyline now for 2 days.  The muscle jerks are the same, & last night I had a terrible time with them (& the pain of course too).

What about Magnesium deficiency?  That is common in Fibro & then we have the malabsorption on top of it.  I know the blood levels do not show a deficiency very often so how do you know you are deficient & how much you should take?

I swear I am not going to try all these new fibro meds until I can get to the bottom of these jerks & twitches!  My husband is starting to see them and trust me he is not very observant kind of guy! ;-)

Grrr!  I am determined to find help.  I just do not feel like my PCP has knowledge about WLS or  Fibro.  I have asked to go to the pain clinic, but he seems hesitant.  I am not sure why???

Gina Farrell Passion Parties Consultant
RNY 9-18-08
HW-260 Consult Wt-246 SW-218 GW-150 
CW-148  5'8" BMI 22
9-27-10 LBL & BL/BA- Dr. Sauceda, Monterrey, MX :-)
PamtasticNewLife
on 6/3/10 2:01 am
Topic: RE: Anyone on Savella?
I'm off the savella, I couldn't handle the side effects. Had an appt with my rheumatologist yesterday, he gave me a couple other meds to ask my pain management dr about? Have been thinking seriously about just seeing one of these guys. Since I am the one having to do the communication between them, yes gave my consent for them to talk about me. Lol
guess they're both just too busy to get it together?
One was a brand new med that was just released a couple weeks ago.
Pennsaid and Xyrem. CVS doesn't even have these in their pc system yet.
Pharmacist said if I have an energy problem I should request provigil.
This is getting long if you would like to chat pm me.
Pam
choctaw4ever
on 6/2/10 6:41 pm - Spokane Valley, WA
Topic: RE: I'm a little ticked off!
Be careful with Savella I was soo sick for 2 months from it. I got all the side affects after being on it for a few months. Check the paper work It is scary. I got heart problems high blood pressure and all kinds of stuff. I stopped it now. yes I walk like I am 80 hurt most of the tie. But I am just going to live with the dang thing have since 1998. I even have had docs tell me no such thing as Fibro..Oh really them what do I have and how will you treat it I asked He answered well with same meds what a joke. Baclafin for muscles is given to folks with MS and I take that it helps alot. And I fight the wheel chair thought all the time. I just won't give in to it. Pain is an every day thing and sleep is a joke I did get a sleep number bed and love it! I actually can lay down with out pain most night but I still have trouble sleeping. Honestly I am thinking of getting a medical card for marijaunna and trying it at least it is natural and I might slepp some. If it works for cancer pain It might work better for me than all these drugs I am sick of taking and switching all the time. And yes we look healthy which is the worst of it all. People can be so mean calling us lazy and it is all in our heads. Cymbalta commercials make me mad. I have not worked since 1998 I was 38 then. I was lost for years. i was a work aholic now I try to think of little things to do to stay active. good days and bad as we all know. Complain to a doc they just change your meds Yawn I am off most and am staying off.
choctaw4ever
on 6/2/10 6:21 pm - Spokane Valley, WA
Topic: RE: Anyone on Savella?
Get off that stuff. I had heart problems too racing heart beat high blood pressure all kinds of stuff and yes all of it if you read are side affects. It made me so sick for 2 months I tought I would have a stroke which yes it can give you. Pull out side affect paper it is bad news. Lyrica is also It works for a few years but yes I gained 40lbs in a month all of a sudden and cause my arms to flail all over uncontrolled.(Not listed in side affets by the way)  I gave up on it all I am even trying to quit Cymbalta, seems all these meds have made it worse. been sick since 1998 or before with it and give up on all these drugs way to many side affects.
choctaw4ever
on 6/2/10 6:13 pm - Spokane Valley, WA
Topic: RE: questions
When i had the Gastric Bypass five years ago I seemed to do okay I followed evrything to the letter they asked and well still try to. Fibro acts up as you know from any change to your body. You may have worn off all the drugs from Hospital and need pain meds some for a few more days. But make sure you eat or you will get sick. Try to watch diet to letter it gets better when you do. All I recall is loving when I finally got a few bites of mashed potatos. And I mean a few lol. It does get better I promise. Have had fibro diagnosed in 1998 And yes weight off helps so hang in there
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