Fibromyalgia Thread

[tiggspring]

Hi Guys

I think I'm comming out of the hibernation I've been in the last two weeks.
Saw my Dr today and so far so good. Thinking about breast reduction to ease headaches and pain. Have any of you had this done? I did discuss the XMRV virus which he knew nothing about it.

DH did some more digging and found the Journal article and the researchers doing the study. WOW does this look promising! For the first time I think they are onto somthing similer to when they found lyme disease. I have already contacted the research group to see about being part of the study. That is something I would ususally never consider. Here are the Links in case anyone is interested:

http://www.anapsid.org/cnd/xmrv/xmrv-science-23-oct-2009.pdf

http://www.wpinstitute.org/xmrv/xmrv_qa.html

http://gordonmedical.com/gma_xmrv_public_announcement_10-15-2009.pdf

Momelie & Brighteyes hope you have good news for us tue and wed after you see the Docs!

 

[brighteyes]

I really don't know where else to turn.......

Fibromyalgia is a secondary diagnosis for me. My primary diagnosis is an autoimmune arthritis, for which I have been taking a biologic medication via infusion for the last 3 1/2 years. Over the last year its become documented (as in black box) that a known side effect of the drug is non-Hodgkins Lymphoma. Lordy, that hurt to write.

Over the last 4 months, my pain management doctor, who treats the Fibro and the arthritis pain, changed my fibro medication from Lyrica to Topamax because of the weight gain from the Lyrica. I was so thrilled with the weight loss! At this date, 4 dress sizes - I'm smaller than my 14 year old!!!! I thought it was all from the Topamax/Fibro connection.

Then at the end of September, I came down with what I thought was the flu. No surprise that with my weakened immune system, the Tamiflu didn't work and I had to go on antibiotics, as it settled in my lungs, and I became short of breath, and just taking a shower exhausted me. I've been on antibiotics from September 26th till this past Tuesday. My white blood cells have risen continuously, and I have continued to run a low grade fever, no matter what.

The primary care doctors have kept switching antibiotics, and one suggested that I might be starting peri-menopause (I'm in my early 40's, but had a partial hysterectomy in my mid '30s, so wouldn't know via the usual symptoms). Yesterday, they finally threw in the towel and are referring me to a hematologist/oncologist.

Probable diagnosis: Non-Hodgkins Lymphoma. :scared1

I'm scared spitless. So's DH. We haven't told the girls (14 and 11). Or my parents. I have an appointment at Moffitt Cancer Center on Tuesday for a bone marrow biopsy and as I type this I really can't believe I'm writing these words in relation to me! All I wanted to do was walk and move without pain, and get a little of my energy back. Was that so bad?

Help? I need to go be homework wrangler for a little while, but I'll be back! Thanks!

My thoughts are with you tonight. I am thinking that it must be a hard night for you knowing you have your appointment tomorrow. I do not know what a bone marrow biopsy is but it sounds very painful and scary.

 

[TinkerBean]

Momelie - I will be thinking about you

 

[stampin_fool]

Momelie, good luck today. My thoughts and prayers are with you.

Ronda

 

[tiggspring]

Momelie Been thinking of you all day

 

[tiggspring]

I got a reply on the study. They are just starting up. No subjects yet. Too much to put here. If you are interseted in what they said I'll Pm the entire email. Just let me know.

 

[brighteyes]

I got a reply on the study. They are just starting up. No subjects yet. Too much to put here. If you are interseted in what they said I'll Pm the entire email. Just let me know.

Good luck, hopefully you can get in on it. Glad to see you are out of hibernation. I on the other hand, am going into hibernation. The next two weeks are soooo busy with school. If I make it through this, then that is half the battle.

I have never had breast reduction surgery. I don't think I have enough. lol

Eduke: I have never thought to be tested for celiac, however I think it is just a symptom of my flare ups. I should have specified it is not only my face, but I am swollen and more sore on my whole body, even in my fingers. However, it just seems very noticeable on my face. My eyes are puffy, swollen, my face, it is noticeable - I just really look like crap on those days.

People say it is in my eyes. And on these days it more noticeable that i have my brain fog. I actually just found out what that was, I always assumed I was having some sort of reaction to my meds. Even though I have been on the same meds for almost two years now.

BTW guys, my dr. app is next week - not this week, so I will let u know what I find out then.

Hope you all have good days tomorrow.

Momelie - We are thinking of you.

 

[mommy2allgirls]

Can I post here even if I don't have a fibromyalgia diagnosis? My symptoms started a year ago. I have burning and numbing sensations in my legs and it sometimes moves up my trunk and to my arms. I suffer from headaches almost everyday. My legs are weak and sometimes I have to use a cane or wheelchair in order to get around. I have muscle spasms and I can't think of any of my other symptoms right now, I guess not remembering things clearly is one. My husband has been working from home the past couple of months because it is sometimes just hard for me to get out of bed and move. I am currently going to an MS clinic but am still undergoing tests so no official diagnosis at this time. I am currently on several medications. Lyrica, cymbalta, depakote, ambien, baclofen, tinzanadine, and then another one I can't remember it is supposed to help you relax to help you sleep. I have trouble sleeping at night. Some nights I end up not sleeping at all so of course I crash the next day. This has been really hard on me because I have 4 young girls ages 5 and under. My symptoms started in my last pregnancy I guess it has been 14 months now so I have missed out on a lot with my youngest.

Today was my husbands first day to go into work in a while and it was hard on me. I had this huge headache and by the end of the day I felt like I just couldn't hang on.

We are going to WDW next month, we have had this trip planned for a year and a half so before all of this happened. Any tips or advice? I will be bringing my cane and possibly my wheelchair, if I don't bring my wheelchair I will rent one on the days needed.

I understand if you don't want me posting here since I don't have the fibro diagnosis but from everything I read you all understand more than anyone what I am going through. I feel like I can relate to you!

 

[yoopermom]

Just wanted to thank everyone who posts on this thread, although I don't post often, I do read it daily. I had bloodwork yesterday and am THRILLED to report that I finally have my cholesterol under 200 for the first time in umpteen years (largely due to meds, but hey I'll take it). 143
I know it won't affect my fibro, but at least I'm less likely to have a heart attack while I deal with the fibro symptoms

Now here's a question for y'all, do you think ANY climate in the U.S. is better for fibro sufferers than others? I live in the upper Midwest, and our climate is not ideal. My father, who has had terrible fibro for 15 years vacationed in the SW this summer and, despite not liking the heat, felt that his fibro symptoms were lessened. Anyone?

Terri

 

[Tweevil]

Just wanted to thank everyone who posts on this thread, although I don't post often, I do read it daily. I had bloodwork yesterday and am THRILLED to report that I finally have my cholesterol under 200 for the first time in umpteen years (largely due to meds, but hey I'll take it). 143
I know it won't affect my fibro, but at least I'm less likely to have a heart attack while I deal with the fibro symptoms

Now here's a question for y'all, do you think ANY climate in the U.S. is better for fibro sufferers than others? I live in the upper Midwest, and our climate is not ideal. My father, who has had terrible fibro for 15 years vacationed in the SW this summer and, despite not liking the heat, felt that his fibro symptoms were lessened. Anyone?

Terri

Hi Terri!
I swear that when I am in FL my symptoms lessen. And I used to go (before it was a budget buster) to the tanning place just for the heat I think. I swear that after I left there my joints felt better. I am in NJ now and it's not been a good week at all.

HTH

 

[EDuke98080]

Hi All,

Been thinking 'bout you guys today. Hope all went well Momalie. sending prayers your way tonight.

 

[brighteyes]

Can I post here even if I don't have a fibromyalgia diagnosis? My symptoms started a year ago. I have burning and numbing sensations in my legs and it sometimes moves up my trunk and to my arms. I suffer from headaches almost everyday. My legs are weak and sometimes I have to use a cane or wheelchair in order to get around. I have muscle spasms and I can't think of any of my other symptoms right now, I guess not remembering things clearly is one. My husband has been working from home the past couple of months because it is sometimes just hard for me to get out of bed and move. I am currently going to an MS clinic but am still undergoing tests so no official diagnosis at this time. I am currently on several medications. Lyrica, cymbalta, depakote, ambien, baclofen, tinzanadine, and then another one I can't remember it is supposed to help you relax to help you sleep. I have trouble sleeping at night. Some nights I end up not sleeping at all so of course I crash the next day. This has been really hard on me because I have 4 young girls ages 5 and under. My symptoms started in my last pregnancy I guess it has been 14 months now so I have missed out on a lot with my youngest.

Today was my husbands first day to go into work in a while and it was hard on me. I had this huge headache and by the end of the day I felt like I just couldn't hang on.

We are going to WDW next month, we have had this trip planned for a year and a half so before all of this happened. Any tips or advice? I will be bringing my cane and possibly my wheelchair, if I don't bring my wheelchair I will rent one on the days needed.

I understand if you don't want me posting here since I don't have the fibro diagnosis but from everything I read you all understand more than anyone what I am going through. I feel like I can relate to you!

Of course you can post. Any chronic illness is something we understand here. I was going to say the symptoms you mention sound a lot like my friend who has MS. Either way, it is hard not knowing what you have.

Any advice I have is - listen to your body. I found the first time I was there I was better. The second time, I still had my symptoms and had to do nothing for a day or two so I didn't have a crash. The last time we were there we had tickets to MVMCP and we left at 9 or so after Wishes because I could not walk any more. I did not care about losing money it was time to rest.

Walking is the most difficult for me. So if you have a wheelchair and feel that you need it, by all means, go for it.

Stephanie

 

[brighteyes]

Ha - I spoke too soon. I am flaring or crashing or about to. I woke up this morning swollen again. Even my fingers are puffy. And I am in a fog. I did too much these last two days at my placement. I was lugging around heavy stuff and was hoping this wouldn't happen.

Yoopermom: That is great that you are off your BP meds. I am on two kinds and hope one day I can be off them as well. YEAH Great Job

I want to move to FL because I hate our winters here. I find when it is rainy or cold I am in more flares. Shovelling brings on the flares too. I am way worse in the winter here.

Stephanie

 

[Momelie]

Hi guys!

Well, don't want to burst your bubble, but I'm in FL, and I have some really bad symptoms, just like everybody else! We do have the warm weather, but we also have the really MOIST weather! My experience is that I can tell the minute that barometer starts falling (or is it rising? Fibro fog, y'know?) and I need to get under a blankie, even if its 90 degrees out there! I would think somewhere in the southwest might be better, that doesn't have all the moisture in the air to mess with your joints, but that's JMHO.

The Dr.'s appt. went a little better than we were braced for - we can rule out Stage 3 and 4 NHL! But not Stage 1 and 2, therefore I must go and have a (very expensive) PET scan done on the 18th. When they said that, my first mental picture was putting my dog Daisy on a scanner.....

They took enough blood to make about 8 vampires happy, and I should have those results in a few days, we'll see what that says. In the meantime, I'm just feeling relief that the worst didn't happen!

I'm going to celebrate by finishing up the Food and Wine at Epcot this weekend, I think!

Thanks for all the hugs and support - sending those hugs right back to all of you!

 

[tiggspring]

Hi guys!

Well, don't want to burst your bubble, but I'm in FL, and I have some really bad symptoms, just like everybody else! We do have the warm weather, but we also have the really MOIST weather! My experience is that I can tell the minute that barometer starts falling (or is it rising? Fibro fog, y'know?) and I need to get under a blankie, even if its 90 degrees out there! I would think somewhere in the southwest might be better, that doesn't have all the moisture in the air to mess with your joints, but that's JMHO.

The Dr.'s appt. went a little better than we were braced for - we can rule out Stage 3 and 4 NHL! But not Stage 1 and 2, therefore I must go and have a (very expensive) PET scan done on the 18th. When they said that, my first mental picture was putting my dog Daisy on a scanner.....

They took enough blood to make about 8 vampires happy, and I should have those results in a few days, we'll see what that says. In the meantime, I'm just feeling relief that the worst didn't happen!

I'm going to celebrate by finishing up the Food and Wine at Epcot this weekend, I think!

Thanks for all the hugs and support - sending those hugs right back to all of you!

Thant Great News! Hopefully the next scan will show nothing and you will have some sort of wierd infection or parisite like my toxoplasmosis. If the local expert for FMS hadn't been a Infectious disease specialist I doubt they would have found that. Boy do I know what you mean about the blood. When I was diagnosed and being treated for Toxo they used to take 6-8 viles at a time each week week. Sending good Vibes your way!!!

 

[ireland_nicole]

Just wanted to thank everyone who posts on this thread, although I don't post often, I do read it daily. I had bloodwork yesterday and am THRILLED to report that I finally have my cholesterol under 200 for the first time in umpteen years (largely due to meds, but hey I'll take it). 143
I know it won't affect my fibro, but at least I'm less likely to have a heart attack while I deal with the fibro symptoms

Now here's a question for y'all, do you think ANY climate in the U.S. is better for fibro sufferers than others? I live in the upper Midwest, and our climate is not ideal. My father, who has had terrible fibro for 15 years vacationed in the SW this summer and, despite not liking the heat, felt that his fibro symptoms were lessened. Anyone?

Terri

I am much better as far as my symptoms now that we live in Texas. It's not too humid here most of the time, and it's reasonably warm to freakishly hot a good part of the year I do have more pain when the weather's changing, especially if it's about to rain, but it's so, so, so much better than before I moved here.

 

[tiggspring]

Can I post here even if I don't have a fibromyalgia diagnosis? My symptoms started a year ago. I have burning and numbing sensations in my legs and it sometimes moves up my trunk and to my arms. I suffer from headaches almost everyday. My legs are weak and sometimes I have to use a cane or wheelchair in order to get around. I have muscle spasms and I can't think of any of my other symptoms right now, I guess not remembering things clearly is one. My husband has been working from home the past couple of months because it is sometimes just hard for me to get out of bed and move. I am currently going to an MS clinic but am still undergoing tests so no official diagnosis at this time. I am currently on several medications. Lyrica, cymbalta, depakote, ambien, baclofen, tinzanadine, and then another one I can't remember it is supposed to help you relax to help you sleep. I have trouble sleeping at night. Some nights I end up not sleeping at all so of course I crash the next day. This has been really hard on me because I have 4 young girls ages 5 and under. My symptoms started in my last pregnancy I guess it has been 14 months now so I have missed out on a lot with my youngest.

Today was my husbands first day to go into work in a while and it was hard on me. I had this huge headache and by the end of the day I felt like I just couldn't hang on.

We are going to WDW next month, we have had this trip planned for a year and a half so before all of this happened. Any tips or advice? I will be bringing my cane and possibly my wheelchair, if I don't bring my wheelchair I will rent one on the days needed.

I understand if you don't want me posting here since I don't have the fibro diagnosis but from everything I read you all understand more than anyone what I am going through. I feel like I can relate to you!

Welcome Mommy2all girls.
You sound just like me my first two years. My symptoms were so much worse while they played around with my med's. I had a never ending headache for more than a year straight and when alone I crawled to get to the bathroom so I wouldn't fall!

As for the trip, I finally had my first vaca in 4 years in May after canceling 2the year before because by the time I was done packing I was done. This last trip I packed a month in advance.That way I could add things I forgot as I went along and no stress to get it done on time. I also packed each days outfits together for the entire family instead of everyone having their own suitcase. That way I did not sort through clothes at WDW just grabbed that days bunch. I am going to try packing cubes next time I have heard here on DIS that they are great. We had separate suitcase for hotel up/down so no sorting through suitcases for that either. I also tweaked my med's so I could take the maximum amount and get the most benefit from them the week I was at WDW. I put myself on almost total bed rest the entire week before by having my bedroom set up as a daycare so DD4 could play/watch TV all day with me still in bed.

On the trip down I had portable heating pad/massager (you would love that brighteyes ) and to my stronger muscle relaxants so I wouldn't get stiff. while there I took a shower every morning and every evening so I wouldn't stiffen up and got a break from the kids. Finally each kid had ther own fanny pack even the 4yr old. So i was not carrying all the little snacks etc in a big bulky bag.

Hope some of this helps. Have a great trip and let us know how you did!

 

[tiggspring]

Just wanted to thank everyone who posts on this thread, although I don't post often, I do read it daily. I had bloodwork yesterday and am THRILLED to report that I finally have my cholesterol under 200 for the first time in umpteen years (largely due to meds, but hey I'll take it). 143
I know it won't affect my fibro, but at least I'm less likely to have a heart attack while I deal with the fibro symptoms

Now here's a question for y'all, do you think ANY climate in the U.S. is better for fibro sufferers than others? I live in the upper Midwest, and our climate is not ideal. My father, who has had terrible fibro for 15 years vacationed in the SW this summer and, despite not liking the heat, felt that his fibro symptoms were lessened. Anyone?

Terri

I would say the SW. Dry heat no huge barametric changes. I lived in New England when I got sick and I felt every little change. We moved to West Virginia on the ohio border and the fluctuations were much better of course the ocean wasnt changing the pressure every 5 min. Now Im just 4 hours north and its a bit worse. We are now closer to the great lakes. Just close enough for my fickle body to feel the difference. I would love to get a sauna because when at home shows I'v gotten in and that dry heat was Fabulous. Add no pressure changes and I think that would help. If it was a cure I'd move tomorrow.

 

[tiggspring]

Sending Pain free vibes and pixie dust to all!

 

[mommy2allgirls]

Does anyone have a good recommendation for a good pair of shoes for WDW?