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Posted 1/12/2011 6:51 PM (GMT 0)
Hi everyone!

I'm new to this forum (actually....new to forums in general). My name is Suzi, I'm 26 years old and I live in NY. I've been suffering from Fibromyalgia for a few years now (however, just diagnosed a little over a year ago).

I was put on Savella over the summer, and over all been feeling a little better. Unfortunately, since the winter started, the pain and fatigue is worse than its ever been! Some days, it's hard for me to even get out of bed and get moving. Just curious if anyone else suffers worse in the winter. I love being active and keeping myself busy, and have just been getting REALLY depressed lately because I can't seem to find the energy or motivation to do ANYTHING. Over the summer, when I started the Savella and was feeling better, I was running everyday and feeling fantastic! I just can't get myself to do it now, everything hurts. The bitter cold (and all this snow we're having) is just not helping :( Plus, I feel like I don't get much help from my Rheumatologist....

It was suggested by a friend of mine, to join a forum and perhaps talking with other people so suffer from the same condition would provide some support (and maybe be able to provide support to others!)

Well, that's all for now! If you'd like to chat, feel free to respond, I'd love to hear from you :)
Posted 1/12/2011 7:23 PM (GMT 0)
Hi Suzi, welcome to our fibro family, we have alot of great members here and we all try to be very supportive of others. I am another one that struggles with winters. I just want to hybernate because I cant handle the cold and the snow. I wish I could make hybernating work but my husband depends on me for rides too and from work. I usually do most of my shopping when I pick him up from work, saves on a trip out of the house. lol Energy is another thing I have been really low on a friend who is a nurse told me to try vitamin B as it is supposed to help with energy. I am going to pick some up at Wal-mart tonight and give it a try.
Anyhow once again welcome and always feel free to ask questions, vent if you need too or offer advice to others. Hope to hear from you soon.
Gentle Hugs
Shirley
Posted 1/12/2011 8:14 PM (GMT 0)
Hi Suzi and welcome to our "family". I am sorry you are suffering but glad you found us. I think each and everyone of us with fibro or chronic pain hate winter. The pain is just so much worse. I don't have much to offer (I am still struggling myself) but alot of our members have some great suggestions.

Once again, welcome and I hope you keep coming back! Take care.
Posted 1/12/2011 8:38 PM (GMT 0)
Hi Suzi:   I also suffer more in the cold weather.  My body goes into a major flare right before a snow storm hits.  I normally don't take pain medication unless I have a severe migraine but I had to take some the past two days due to the snow.  I agree malic acid/magnesium helps with pain and vitamin B complex gives me energy.  Try to stay active - yoga helps stretch and relieve.  Wishing you the best.
Posted 1/12/2011 9:47 PM (GMT 0)
Hey Suzi. So sorry you are suffering.

Winter time is hard on me too. Everything seems to get worse. I don't understand why though.

I stopped seeing my rehuem. cause she was no help to me. Just wanted me to take vitamins and exercise more. I get more support from my family dr.

I hope that you get to feeling better soon. It will be spring before we know it.
Posted 1/12/2011 10:58 PM (GMT 0)
Hi Suzie and welcome to the forum!! There are a lot of great people on this forum and quite a few newer young ladies like yourself. I also mostly go to my primary care doc, the rheumy did diagnose me but he felt comfortable with my doc taking care of my meds.

Maybe your savella is due to be upped? I am not a doc but some of the meds need upped after a while. I don't go out much in the winter unless I don't have a choice.

Not sure if the thread called fibro 101 was mentioned, it is a great source for information.
Posted 1/12/2011 11:03 PM (GMT 0)
Wow! Thank you all for such nice responses! I can't seem to figure out a way to respond separately so i'll just do one post :)

Are any of you on maintenance meds (like savella, lyrica, etc)? Savella is the only one I've tried. I had a few side effects in the beginning like shakey hands, nausea, loss of appetite (which i didn't mind much haha), but now I've gotten used to it. My Rheaumatologist also rx'ed me flexoril, the muscle relaxer, to help me sleep at night because I would toss and turn all night and wake up in pain (inevitably resulting in me losing 2 jobs because of all the problems I was having). Thankfully, I'm managing much better now and had gotten a new job a few months ago (full time) which I love so I fight through it every day.

The flexoril does wonders for me at night, I don't have a problem sleeping anymore. My problem now is during the day. My Dr. isn't much of a help AT ALL and I have half a mind to stop seeing her. I've repeatedly asked her for suggestions re: what to do about the pain during the day so I can function like a normal person, and I basically get told to "take an aleve and deal with it" in so many words. No OTC meds worked for me, so I don't even bother taking them anymore - I just suffer all day.

Sometimes when the pain is really bad, I'll bathe in epsom (sp?) salts, which help relieve the pain for about an hour or so. Over the summer, I was running (well, more like fast walking/jogging lol), doing yoga and doing the Wii Fit. I felt better than I had in years! I thought it was the meds, but now I'm convinced it was bc of the physical activity. Not to mention I was in great shape haha. I want so badly to get back on the "fitness wagon" but I literally do not have the strength sometimes. Even something as small as vacuuming or food shopping makes me want to lay down and take a nap for the rest of the day. I love to cook, and I can barely do that anymore. It's so frustrating. I've battled depression over the years and I fall back into it very quickly when my Fibro acts up. Living each day feeling like I got hit by a bus is not a way a person should live. Thankfully, I've been in much better spirits for the past few days.

I've tried the vitamin B for the energy...but I don't think I continued with it long enough to notice any results. Maybe I should retry it!

Do any of you suffer from fevers when you get flare ups? It's been happening a lot recently.

My boyfriend and I plan to get married and potentially have kids within the next few years, and I'm worried that being pregnant with Fibro will be very difficult. I want kids SO SO badly and cannot WAIT to be a Mom, but I anticipate that I'll probably have a very painful and exhausting 9 months. Do any of you have children, or have been pregnant while suffering with Fibro? How do you deal? I'd love to get some feedback!

Thanks again for all your responses, I really think I'm going to like this forum smilewinkgrin Can't wait to hear back!
Posted 1/13/2011 3:58 AM (GMT 0)
Suzi,

I'm pretty sure I was developing fibro from the time of my first pregnancy, but it kind of flew beneath the radar.  During my 2nd, I noticed that I couldn't do the simple prenatal exercises everyone else in the class was having no problem with...they made me weirdly achey.  While I was nursing this baby, I began to have permanent soreness in the muscles between my neck and shoulder (whatever they're called) and it's still there...I just don't aggravate it anymore if I can possibly avoid it. 

But the 3rd pregnancy was when I really started wondering what the heck was wrong with me.  All the strange symptoms that characterize fibro and seem to have nothing to do with eachother were hitting me hard.  And after my last baby was born, my back pain became incredibly bad.  I thought maybe it was my internal organs about to explode or something!  A year or so later, (age 35) I finally found a good chiropractor and, more importantly, a good diagnostician who said he thought it was fibro.  I wasn't crazy - or dying!  :-)   I had never even heard of it.

I would think it would be better to go into motherhood knowing what you're dealing with - and who knows, you might even feel better while pregnant!  Some people on this forum have said they did. 

Debbie

 

Posted 1/13/2011 4:16 AM (GMT 0)
Welcome Suzi. I'm glad you are in here with us!

Free Spirit
Posted 1/13/2011 4:27 AM (GMT 0)
Welcome to the forum suzie. This is a great place. Lots of understanding and sometimes that's just what I need. Sorry the weather is affecting you so badly. I too am having a rough time with the snowstorms. I think a lot of us are right now. As someone suggested..try reading the fibro 101 thread. Its got some great information and suggestions.
Posted 1/13/2011 3:24 PM (GMT 0)
welcome Suzi,

I understand that you have some depression issues and sometimes winter will bring on seasonal depression. this will make your fibro worse. It is really important to be outside at least 20 minutes every day and to make sure your curtains are open to the sunshine and to have flowers and other "colorful" things around. My daughter suffers from this every winter and she needs additional meds to help her through it. When spring comes she feels better and weens off the additional meds till the next year. Its a mean cycle but she at least gets the added help when it comes around and this is good for her and her 3 boys. Sometimes she may not see it coming but I do and I point it out to her and she starts the new meds. Its very important to catch it early and start the meds (at least in her case - she goes down hill very fast).


My daughters boys are all under the age of 6 and as long as she keeps up with her depression meds and her "fibro" meds she stays functioning on a fairly even keel.

hope this helps.
Posted 1/13/2011 5:21 PM (GMT 0)
Hi Suzi welcome to our fibro family,

In the winter the pain and fatigue has been worse for me. Some days, it's hard for me to even get out of bed and get moving to but i do try my best sometimes it just doesnt happen that way though. I have been suffering worse all year round. I have been really depressed to lately because I can't seem to get my new rheumy to tell me it is fibro the other two did and i am tired of going back and forth to get tests that come back normal(not that thits a bad thing). Lately I can't get myself to do much of anything either and it makes me mad. The snow we're having is not helping me either I think we all go through that so I only go out when I have doctors appointments. I also take lyrica 150 mgs 2xs a day and it does help as long i take my pain pills to. I also take hot baths in epsom salt that does help alot i wish i could sit in the tub all day long. Make sure you do check out fibo101. Nice to have you aboard.
Posted 1/13/2011 5:43 PM (GMT 0)
Yes, yes, yes I suffer very much in the winter. As a matter of fact I had to go to doc yesterday because I can hardly get off the sofa. Needed pain meds. I suffer so bad in winter it is undescribable....keep the heating pad close cause you will need it. I suffer from restless leg syndrome bad and my legs are uncontrollable when they are cold. Good luck to you, this is like a roller coaster ride daily. Hold your head up high.
Posted 1/15/2011 4:52 PM (GMT 0)

helpmerhonda said...
Yes, yes, yes I suffer very much in the winter. As a matter of fact I had to go to doc yesterday because I can hardly get off the sofa. Needed pain meds. I suffer so bad in winter it is undescribable....keep the heating pad close cause you will need it. I suffer from restless leg syndrome bad and my legs are uncontrollable when they are cold. Good luck to you, this is like a roller coaster ride daily. Hold your head up high.

Wow, you sound just like me! Believe me, the heating pad has become my best friend LOL It's so hard....I wish Dr's knew more about it. I feel like very few Dr's are interested in helping people w/ Fibro. It makes you feel so lost and alone (doesn't help with the depression when Dr's make you feel this way). Every winter seems to get worse and my wanting to move to Florida grows bigger EVERY year lol. My boyfriend's Mother suffers from Fibro and she moved to Florida after living in NY all her life. She couldn't handle the cold winters any more.

What kind of pain meds are you taking? My Dr. says she never rx's pain meds so basically not even ask her. It sucks. When I was first diagnosed with Fibro my regular family physician rx'ed me vicodin which is honestly the ONLY thing that helps. Unfortunately, when I came back a few months later, she was gone :( All these Dr's act like I'm "pill seeking" and it makes me feel so bad. I wish someone would help :( I debated on seeing a pain management specialist...anyone go to one of them???
Posted 1/15/2011 9:33 PM (GMT 0)
hi suzi my name is teresa i am new to the forom . you will have to excuse me not very good with computer. i was diagnosed with fibro two years ago. i am on c over.rutches my whole body aches all over .ive had trouble with doctors. i take tramadol and antripeline plus on depression tabs as well. my daughter helps me with washing cooking and house work as i am in to much pain most of the time. i have been to a pain clinic . the clinic does not help you with your pain. but it was nice to meet other people the same as your self. god bless teresa
Posted 1/15/2011 10:10 PM (GMT 0)
I go to a pain management/fibro center. It is a good place for people with chronic pain like us. I went expecting the first visit they would find something to miraculously help me..but its a long process to try to find the right medications. IMHO the pain management dr..as much as I don't like his nursing staff has been the only one to really acknowledge my pain. You could try a rheumatologist too. At my pain clinic they give trigger point injections..you have to go to a pain management counseling group class for 12 weeks, etc. It is definately been worth it for me. As annoying as it is to not immediately feel better..I do know they are working on it. Hope you find something to help you!
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