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cheller

firomyalgia

Posted by @cheller in Brain & Nervous System, Apr 23, 2012

hello everyone i'm new at this but was wanting to talk to other people about fibromyalgia and the symptoms that other people have

Tags: Other

anon95031863

Posted by @anon95031863, Apr 25, 2012

Hi. I just joined, too. This could prove to be a great network for everyone.

Kerri Lynn likes this
kerrilynn1

Posted by @kerrilynn1, Apr 29, 2012

Kjsddasa thanks for joining our exclusive club...lol. Fibromyalgia isn't an exclusive club, it affects millions of peoples lives. When I was diagnosed in 2001 it wasn't a well known syndrome and now we actually have FDA approved drugs specifically for fibromyalgia. A lot has changed in 10 years. I hope in another 10 years they will find the cause & a cure

roxie43

Posted by @roxie43, Apr 29, 2012

Take care of yourself

Kerri Lynn likes this
kerrilynn1

Posted by @kerrilynn1, Apr 29, 2012

Thanks Roxie, you take care of yourself too!

roxie43

Posted by @roxie43, Apr 29, 2012

I will my dear.

Kerri Lynn likes this
kerrilynn1

Posted by @kerrilynn1, Apr 27, 2012

Hi, I am new here too. I was officially diagnosed with fibromyalgia in 2001, but it took me years to be diagnosed. I also have chronic fatigue syndrome. I've done a great deal of research and if anyone wants to talk about FM or CFS Im ready.

mklr2009 likes this
mklr2009

Posted by @mklr2009, Apr 27, 2012

I'm open to talk with you about fibromyalgia and chronic fatigue syndrome if you want. I was diagnosed in 2008, after months of suffering. I think I began with it in about 2005, but a bout of mono pushed me over the top with full blown symptoms. It's been a long journey, but I do think I've come a long way. The first decision that I made along the way that made a huge difference was that I would not be defined by my diagnoses; they are only a small part of who I am. How are you coping?

Kerri Lynn likes this
kerrilynn1

Posted by @kerrilynn1, Apr 29, 2012

Mklr2009, I am not coping well. I am hanging by a thread. I've been stuck in bed almost 2 yrs. I had a bad respiratory virus that pushed me over the edge in 2010, before that I was pretty good if I paced myself. I try and I fight and I hope that I can get this under control. I agree with your decision not to let it define you. In the last 2 years I have had some other medical issues develop & these conditions and the meds the Drs keep trying are causing me to constantly repeat the cycle of pain/fatigue. I get maybe 3 or 4 days a month I can leave the house. I've had FM for 10+ years, I was able to keep it in check until the virus.

kerrilynn1

Posted by @kerrilynn1, Apr 29, 2012

Hi jodi, I had a sleep study & of course I got plenty of rem sleep that nite. Over the past 15 years I have tried a lot of meds for sleep xanax, vaium, lunesta, ambien... they help sometimes. I also have some other medical issues. I understand the cycle. For the past year & a half I have been having 1 flare up after another. It starts with pain so bad I can't sleep or get out of bed for 5-7 days then the pain diminishes & I sleep 48-72 hours. I have 1 or 2 days I feel well enough to get out of the house, I run a few errands, go out for dinner and then the pain starts & the cycle repeats. I don't know if its the FM, CFS, a combo of both or the recent diagnosis of seronegative spondloarthropy/ankylosing spondyitis. I also have a fusion @ C5-6, my disc ruptured in 1997 & it compressed my spinal cord. I have permanent nerve damage in my legs. I also have neck pain & frequent migraines. I didn't intend to make this about me, but I thought that I should clarify that I have other issues contributing to my pain. It's very confusing for me, I am never sure what is actually causing these cycles. I do know that I have been to 2 new Drs & they are still trying different meds for the AS. I think perhaps the constant med changes are triggering the pain/cycles. I was told by a FM specialist that having FM makes me like the princess in the childrens story who could feel the pea under the 7 mattresses she slept on. I think when you have FM your body is hypersensitive & little stresses whether they are physical or emotional can affect us greaty.

mgriffin44 likes this
jodi

Posted by @jodi, Apr 30, 2012

I hope today is a better one for you I am taking off to a yoga class right now I think it helps mentally as well as physically I do the best I can

Kerri Lynn likes this
kerrilynn1

Posted by @kerrilynn1, Apr 30, 2012

Hi Jodi,
Today is a better day. I woke with a migraine but it is almost gone. My cycle of pain and sleep is over. Im actually going to leave the house today and hope that this does not trigger the pain cycle as it has been for so long. I keep hoping & trying. Yoga sounds wonderful, I enjoy walking too.

piglit

Posted by @piglit, Apr 30, 2012

So happy that the pain eased once again lifted for you. Try not to do too much though. Remember our fairy steps.Maybe have a little walk. I love walking along the beach. Big hugs Piglit

kerrilynn1

Posted by @kerrilynn1, May 1, 2012

Well, I spent 4 hours on the phone with every state, county& federal agency working on getting every form of financial assistance I qualify for. I received my last alimony payment in April, my exhusband drained our accounts (200,000.00$ gone)so I have nothing. He got the house, he is behind 7 months on the mortgage & I get harassed by bill collectors about 3X a day the first week of every month. I'm taking fairy steps, I bought gas and I am waiting for a friend...beer & billiards, his birthday is may 2. We are celebrating early. I did a bit of walking. He is a starving artist & I went to a Walmart Superstore to buy him a couple of blank canvases as a birthday gift. I think that store is a 1/2 mile long ...CRAZY they sell everything from tires, cosmetics, groceries, art supplies, furniture. Ugh I wandered for 30 minutes before I found what I was looking for & another 15 minutes to find the cashier. Not my kind of store. The sun is shining & the rain is falling there is a rainbow somewhere. Big Hugs <3 to you too Piglet!

piglit

Posted by @piglit, May 1, 2012

So proud of you. Keep the fairy steps going. How beautiful I love rainbows Big hugs back Piglit

roxie43

Posted by @roxie43, May 1, 2012

Kerri Lynn keep hanging onto that thread with all your might! We have to believe that better days are ahead. Thinking of you....
Rox

Kerri Lynn likes this
kerrilynn1

Posted by @kerrilynn1, May 2, 2012

Thanks Rox. There are better days ahead for sure. Im thinking of you too.

piglit

Posted by @piglit, May 2, 2012

Sweet dreams my dear friend will talk tommorrow Big hug x0

Kerri Lynn likes this
kerrilynn1

Posted by @kerrilynn1, May 1, 2012

Im back on the phone in 10 minutes, I have 3 other numbers to call and stacks of applications to fill out. The applications will probably have to wait until tomorrow. If it takes as long on the phone today as it did yesterday, I will be lucky to be off the phone by 3 pm...

piglit

Posted by @piglit, May 1, 2012

Hope all works out for you and that your not held up on the phone for too long for to long. Take care piglit

kerrilynn1

Posted by @kerrilynn1, May 1, 2012

I was on the phne over an hour. I may be able to get a grant for paying for my medical insurance, copays & meds, but I can't apply until July.

piglit

Posted by @piglit, May 2, 2012

That's good news, at tleast it may have been worth all the long hours on the phone. Can't they assist you before July, it would be good if they could.

kerrilynn1

Posted by @kerrilynn1, May 2, 2012

No, they wont even answer the phone or take messges. I have 1 hr on the first Tuesday of july, august and september to call and try to get thru. If I don't get thru which often happens because the lines are all busy in july I can try again in aug or sept. If I do get thru its only for a screening to see if Im eligible. Im going to bed early tonite. 11pm. Im a bit tired and it will feel good to close my eyes. Talk to you tomorrow my dear friend Annie <3 Kerri Lynn

china

Posted by @china, May 1, 2012

I feel 4 u. Wishing u better health soon.

Kerri Lynn likes this
kerrilynn1

Posted by @kerrilynn1, May 2, 2012

Thankyou<3 China. Im feeling really good today.

roxie43

Posted by @roxie43, May 2, 2012

So proud that you're taking the initiative to do whatever it takes to feel better!
Rox

jodi

Posted by @jodi, Apr 27, 2012

I have had fibro for 10 yrs. It is cyclic and when I get into a crisis it can last weeks. I get pain esp in my upper neck area which then causes severe headache for weeks. Extreme fatigue. Ensues. I was diagnosed in the fibro. Clinic in Boston mass. The doctor I saw wrote one of the first books about fibrous. When they thought it was a trashcan diagnosis. I do not want to make this about me so if you have any questions please let me know I truly have. Been through. All with fibrous. Jodi

agianf

Posted by @agianf, May 13, 2012

My. Wife has the similar pain for about 5 in the upper back of her neck.goes into her head. ...and sometimes travels to her eye...back of her neck is almost always swollen ..the only thing that has helped has been motrin ..and now that's not as effective .it has been getting worse. The diagnosis. Is a stinosus in her upper back and neck.. still looking for answers besides over medicating

ethelelorm

Posted by @ethelelorm, May 17, 2012

hi Jodi, i hope you doing good. I haven't been diagnosed with fibro but over the years i have been in constant pain and all what the doctors ever do for me is pain management, they even went as far as putting me on steroids none since to have helped and am just so tired. Am in Ghana and it looks like no one seems to understand me when i complain.

eliz

Posted by @eliz, May 17, 2012

Hello Ethel , that was the same for me up till now two years later, they say its too knew and they don't have a lot of studies for it. It also says a lot of doctors don't believe in it. Anit thats crazy!!!
If I was you I would ask your doctor do he know about it and do he think thats what it can be?

ethelelorm

Posted by @ethelelorm, May 18, 2012

hi Eliz, thanks for you thoughts i guess ill just have to continue searching for answers.

anon95031863

Posted by @anon95031863, Apr 28, 2012

Honestly, every time I get a pain I have to wonder if it'll stick with me, or just pass for good. I have fibro, chronic intercostal neuralgia, & chronic fatigue. I try to focus on just one day at a time.

Did you recently get diagnosed?

lighthouse2499

Posted by @lighthouse2499, Aug 20, 2012

I've had fibromyalgia for almost 35 years now. My doctor prescribed Flexeril, a muscle relaxant, to help me sleep and relax. It really works for me. (It also helps my lower back pain from degenerative disk disease, so it packs a double punch.) I take it every night before bed.

mbmh

Posted by @mbmh, Apr 28, 2012

Dear Chelle, I am yet another fibro patient, aged 58, diagnosed two + years ago. There are local pain discussion groups but nothing specifically fibro, and it's lonely when others "don't get it." Apart from sometimes feeling so VERY exhausted, even my loving family members do not seem to understand. One can't wear a sign but some days I need one with the message, "I hurt and am tired." Try to identify one or two close friends who will agree to reach out when you signal.

mgriffin44 and mklr2009 like this
jodi

Posted by @jodi, Apr 28, 2012

They tell me that getting in a good rem sleep helps. Is anyone on any med that helps?

mklr2009

Posted by @mklr2009, Apr 28, 2012

You're right about the message you'd like to wear some days! I think we should have t-shirts made up with that simple message, "I hurt and am tired today". Seriously! My family is wonderful but no one truly understands unless they've experienced this; it's called sympathy v/s empathy. That's why it IS so important to have a few close friends who reach out when you signal. The good news is that my close contacts and I laugh together much more than we talk about symptoms. Laughter is powerful.

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icetea

Posted by @icetea, May 19, 2012

Ladys

Try gabapentin. 100mg. 4 times
pain meds
Yoga every morn. 30 mins
read. Www. Beat and treat.com
IAM. 75% better
10 years for me
Living with bipolar husband------stress. Not your cup of tea

Best of luck
Smoken

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