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momma73

fibro

Posted by @momma73 in Brain & Nervous System, Jul 20, 2011

i been diagnoised with fibromyalgia. Would like meet others with same.

Tags: sleep problems, eye conditions, womens health

Fibro-sufferer, tstewartsd, Debbieclark1 and 5 others like this
bugs38

Posted by @bugs38, Jul 20, 2011

Hi,
I, too have Fibro. I was diagnosed in '96 or '97 with what they called Chronic Fatigue Syndrome & Immune Deficiency Disorder. I'm not sure that Fibromyalgia was even a diagnosis back then. I was diagnosed with Fibro just a few years ago with possible involvement of Lupus and/or Rheumatoid Arthritis along with the Fibro. How long have you been diagnosed?

ssparks5402gmailcom

Posted by @ssparks5402gmailcom, Aug 3, 2011

Hi, I have Fibro since '92 & Chronic Fatigue. Just started on Savella, but it's too soon to tell if it's effective. Just got off of morphine which I was on for years. Glad I am off of that. I am going to try a warm water basic stretching class. ssparks

abc0921 likes this
abc0921

Posted by @abc0921, Aug 3, 2011

I was on savella but had to go to a different antidepressant. It seemed to work for me some but not a big difference. I hope you have better luck Are you still able to work?

nerak

Posted by @nerak, Aug 19, 2012

Does anyone have advice on how to find a fibro support group? My mother in law is in wabasha mn and I'm not really sure how to help her find one in her area. Thanks!

janechaz11

Posted by @janechaz11, Aug 4, 2011

Low-carb diet seems to work well for the pain of fibro. It does in my case.

momma73

Posted by @momma73, Jul 22, 2011

Hi Bugs38
I was diagnosed with Fibro about 9 months ago. I have 2 cousins with Lupas and a couple family members with the fibro. I know from my experience that nothing works as of yet. I am being sent to a orthopedic cause doc is conceren of what else is wrong.I have horrible problems with my ankles and it does affect me in every way...DRIVING is a disaster most the time.So i limit to how far i do drive.

abc0921 likes this
bugs38

Posted by @bugs38, Aug 8, 2011

Oh I'm sorry. I have recently (6 months or so) found relief with a cocktail of medications mixed with massage, exercise and epidural steroid shots to my back. I don't think one thing will ever be enough to deal with it but I have found SOME relief. I hope you do, soon. I take muscle relaxer, sleep aide, meloxicam, cymbalta, ....the list goes on and on. I hate taking them but my choices are limited. Am I the only one on the double digit medications?

janasr

Posted by @janasr, Jan 15, 2012

They have me on 5 or 6 medications. Only thing that seems to help for the pain Is narcotic pain relievers. I hate taking them but have no choice. Can't take the pain

grandmachipmunk

Posted by @grandmachipmunk, Aug 18, 2011

Hi Momma 73~ I was reading your Entry and So I joined and wanted to share with you,, I to was told for years I was too fat etc. My Pain was Really bad, Finally a Dr. told me I Had Fibromilgia , Never heard of it~ well I read about it and cryed for days , yes that is what it was, The releif to know what was wrong, So I found an answer for me, I Take 5000MG of MSM at a time Some times four times a day when it is kicking up, <It stops the spasums for me in about 10 minutes,, I also Drink Yarrow tea. a wild plant and it helps too, Another thing I did Acupunture and that helped a bit.. they say extersize is good ~Well The more I do the more I hurt, I work full time here on our little farm so I don't do extra exersize.. You can Buy MSM At any Drug store. Not expensive. I hope this will help someone. I have and do suffer untold Hell with this and Yo find relief is a miricle.

birdntroutlady

Posted by @birdntroutlady, Apr 27, 2012

Water therapy is good also or swimming/exercise in a heated pool.

roxie43

Posted by @roxie43, Apr 27, 2012

BettyAnn every time I see your pic I just think that you are the cutest thing. I also like how positive you are "All good things are possible". I agree wholeheartedly.
Rox

abc0921

Posted by @abc0921, Aug 3, 2011

i have been diagnosed with fibro for 5 years. it started 2 years earlier with migraines. my m.d. sent me to neurologist for testing. i am unable to work and retired last year. is anyone else still trying to work or has this monster taken over your life as well.

charlotte5660gmailcom

Posted by @charlotte5660gmailcom, Nov 8, 2011

I was diagnosed about 13 years ago and have tried everything. I am still working but it is taking everything I have to do so. The hardest part of having Fibro is trying to make others understand your pain. I don't sleep well ... Up and down several times a night and always in pain. I also have multiple tarlov cysts running the entire length of my spine so yes, pain is a constant and I hate to think about how I will feel in another 10 years!!!!

janasr

Posted by @janasr, Jan 15, 2012

My fibromyalgia was diagnosed 6 mos ago after a surgery. Before that I had migraines,back pain, and achy and tired all the time. I am still working and love my job. It is not physically demanding. Just a desk job. I have been worried lately that I won't be able to work much longer. Anyone had success w disability payments? We can not get by without my paycheck.

momma73

Posted by @momma73, Aug 4, 2011

they have me on requip,lyrica and for the depression im on cymbalta,buspar,and as a breakthrough im on visrtil...all it does is knock me out doc not sure wat to do. and no im not able to work

josieringer

Posted by @josieringer, Aug 6, 2011

i can't afford the name brands, so i am on gabapentin. started with 300 mg, up to 600 mg. also just diagnosed with GERD. was pre-diabetic but got that under control. so will be adjusting my diet again:( i feel the best when i eat a little protein and lots of veggies. sugar is really bad. i also am bipolar II, so they just keep adding the meds. i moved into my own bedroom, which helps some. had to quit my job in Jan., so feel pretty isolated. am happy to have a place to discuss this. What do you do to keep from getting depressed?

dusty14

Posted by @dusty14, Oct 13, 2011

I was diagnosed in the early 90's but they didn't call it fibromyalgia then, I also take gabapentink and hate it ........I am sooopp groggy in the morning that I can't do any morning app'ts I have to wait till it wears off a bit so I can go out How does it affect you?

birdntroutlady

Posted by @birdntroutlady, Apr 27, 2012

It took me some time to adjust, but I'm doing much better now. I take 300 mg in morning and 300 mg at bedtime. It really helps.

birdntroutlady

Posted by @birdntroutlady, Apr 27, 2012

I make sure I do a daily Bible study, do one also in a small study group and make it to Sunday school and church. Prayer can help if you do so continually. Watch funny shows on TV, find 1 relaxing thing to do for yourself each day and don't try to plan too much to do in 1 day. Sometimes all I can get done is shower and cook supper and that's not been much lately and I used to bake bread and pies for family a lot. They're adjusting. Days I wash clothes, I cook an easy meal or my husband brings home food for us to eat. I add fruit to that and we seem to make it fine. I'm praying for you.

abc0921

Posted by @abc0921, Aug 4, 2011

i am in pain all the time and it is something people do not seem to understand. I get so tired. I do not want to do anything...fighting pain takes energy. I try to do one positiv thing for myself each day. I am so depressed I have run out of ideas. I hope this community will become an outlet for me. What do you guys need from it?

CatherineB likes this
catherineb

Posted by @catherineb, Aug 8, 2011

Like you I am in pain all the time. Some days are worse than others, my worst time is at night. When my muscles start to relax and I begin to drift off to sleep, I'll get cramps in my neck ,shoulder and then up and down my spine. I don't know if this is normal fibromalgia symptoms or not. Have you ever heard of any one having these symptoms? I am always tired, thus irritable. My husband blames everything on menopause! And my kids just say "oh, there goes Mom again." I try not to complain but sometimes I can barely get out of my chair. I was hoping for this forum to be an outlet for me too. So if you ever want to talk, just let me know. I'll be checking this site as often as I can.

deewebb50

Posted by @deewebb50, Aug 4, 2011

Hi; the most irriating part wass the first 5 years when my doctor kept telling me it was all in my head. He almost had me believing him butt I couldn't even walk how could that be in my head. Then finally 9 years ago I was diagnosed. I have the chronic fatigue also. I'm depressed all of it. But I don't take any meds. I'm afraid to touch lyrica. I have plenty of morphine for my back I may take 1 once in a while but they don't help. I get shots. In my hips. And it helps sometimes for a little while. But i'm so sore it hurts to get out of bed terribly. I notice lately even my wrists hurt. It hurts so bad sometimes I can't help but cry. And it's hard not to be depressed. I understand everyone of you. But ppl without it. Have no idea. When I first had it most drs. Didn't even bekieve it was real. Lol. Well I was just diagnosed oday with acute kidney failure also. Very low working kidneys not looking good. So. Adds to the depression. But as it is written. God doesn't give us mor that we can handle. Oh I pray for all of us. Amen. Hugs everyone

deewebb50

Posted by @deewebb50, Aug 4, 2011

Hi; the most irriating part wass the first 5 years when my doctor kept telling me it was all in my head. He almost had me believing him butt I couldn't even walk how could that be in my head. Then finally 9 years ago I was diagnosed. I have the chronic fatigue also. I'm depressed all of it. But I don't take any meds. I'm afraid to touch lyrica. I have plenty of morphine for my back I may take 1 once in a while but they don't help. I get shots. In my hips. And it helps sometimes for a little while. But i'm so sore it hurts to get out of bed terribly. I notice lately even my wrists hurt. It hurts so bad sometimes I can't help but cry. And it's hard not to be depressed. I understand everyone of you. But ppl without it. Have no idea. When I first had it most drs. Didn't even bekieve it was real. Lol. Well I was just diagnosed oday with acute kidney failure also. Very low working kidneys not looking good. So. Adds to the depression. But as it is written. God doesn't give us mor that we can handle. Oh I pray for all of us. Amen. Hugs everyone

deewebb50

Posted by @deewebb50, Aug 4, 2011

Hi; the most irriating part wass the first 5 years when my doctor kept telling me it was all in my head. He almost had me believing him butt I couldn't even walk how could that be in my head. Then finally 9 years ago I was diagnosed. I have the chronic fatigue also. I'm depressed all of it. But I don't take any meds. I'm afraid to touch lyrica. I have plenty of morphine for my back I may take 1 once in a while but they don't help. I get shots. In my hips. And it helps sometimes for a little while. But i'm so sore it hurts to get out of bed terribly. I notice lately even my wrists hurt. It hurts so bad sometimes I can't help but cry. And it's hard not to be depressed. I understand everyone of you. But ppl without it. Have no idea. When I first had it most drs. Didn't even bekieve it was real. Lol. Well I was just diagnosed oday with acute kidney failure also. Very low working kidneys not looking good. So. Adds to the depression. But as it is written. God doesn't give us mor that we can handle. Oh I pray for all of us. Amen. Hugs everyone

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mandy

Posted by @mandy, Aug 6, 2011

Wow I'm sorry you have so much on your plate. I've suffered from many things too. However I know that Lyrica and Wellbutrin XL have helped ease my depression and fibromyalgia. Good Luck! Keep looking for an answer and you will find it :)

abc0921

Posted by @abc0921, Aug 6, 2011

it is hard to be so sick all the time. my thoughts will be with you as you go through this added challenge. get plenty of rest so you can work on healing.

momma73

Posted by @momma73, Aug 7, 2011

@deewebb50, wow i guess u are going throigh ALOT, Dealing with fibro and chronic pain is bad enough. i have had problems with my kidney 3 times since September. i will be praying that ur kidneys dont get bad.

tiredofpain

Posted by @tiredofpain, Oct 9, 2011

Glad to know that I am not the only one that cries from this horrible pain. I feel like my depression got worse after I was diagnosed. When you said God doesn't give us more than we can handle, I think I have given my fair share and this diagnoses just puts the cherry on top. I had to give him my twin boys six months apart, raise my oldest son by myself even though I was married to his father. I got no support from my ex-husband when I buried my children. When I buried the second twin Shelby I really got depressed and his response was they are dead get over it. I have other issues in my life to where I thought I was paying my dues but when I was finally diagnosed it was the tip of the iceberg. I became so angry and still am because I think I have given plenty and then getting diagnosed with a non-curable disorder doesn't make me to happy.

77goingon35

Posted by @77goingon35, Aug 5, 2011

Have you ever been diagnosed with Fibromyalgia? Perhaps you should see a Reumatologist.

catherineb

Posted by @catherineb, Aug 7, 2011

I was diagnose with Mayo Facial Pain syndome 10 years ago, but have since been told that, that, was just a pre-symtom of Fibromalgia. Over the years I have been tested for Lupus, M.S. and almost everything else under the sun. In the past few years the heart disease and lung disease have gotten worse and exercise or even physical therapy is impossible for me now. I do some stretching exercises, but sometimes stretching brings on muscle cramps and my joints will lock. Have you ever had that happen? Feels like I get charlie horses up and down my spine. There are so many differant things going on I believed for years it was all in my head.

fibrosufferer

Posted by @fibrosufferer, Nov 22, 2011

It's not in your head!!!
I feel some of the same symptoms!! 🙁
Have you tried using a hot tub??

ricksagirllisa

Posted by @ricksagirllisa, Dec 29, 2011

Hi, im new but I understand how u feel. I was diagnosed w/Condition &u given Lyrica it helps, but I am at max dose 3 times daily lucky husband has good insurance. I too had all kinds of tests (Emg, ct scans, mri) bloodwork, spinal tap. No answers. Just pain! Constant leg cramps. I also have drop foot both feet, had back surgery on L3 better but I can't move around. My primary dr wanted nothing to do w/me I saw his pa for 2yrs I now have specialist for neuropathy, endo neuro surgeon. I want & have hopes of going to mayo so that I can get my life back. Good luck. I tell my daughter there is a reason God has a plan. Take care

birdntroutlady

Posted by @birdntroutlady, Apr 27, 2012

A good neurologist will help with the diagnosis also.

77goingon35

Posted by @77goingon35, Aug 5, 2011

I take glucosamine condroiten for my fibro and artritis. If I miss more than 3 or 4 days I certainly feel the pain again.

mandy

Posted by @mandy, Aug 6, 2011

Try lyrica! It helps, I take it for my fibromyalgia.

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catherineb

Posted by @catherineb, Aug 7, 2011

I've heard of lyrica, but because I have heart disease no one would prescribe it for me. Doesn't matter now any way because I don't have insurance. I use heating pads and topical rubs for the joint pain, but I also have pain in the middle of my extremities, i.e. forearms, thighs shins ect. I also get rippleing contractions up and down my spine Have you ever felt that way?

fibrosufferer

Posted by @fibrosufferer, Nov 22, 2011

I took Lyrica...it did nothing but made me hostile!
🙁
Didn't help with pain!!
Have you tried using a hot tub? I find that it helps for a short time.

catherineb

Posted by @catherineb, Aug 7, 2011

Hi I have applied for Social Security benefits because of Fibromalgia, COPD, CHD and depression. They have arranged for me to see a Mayafacial Pain Syndrome Specialist this coming Tuesday. Any suggestions regarding how to explain the chronic aches and sometimes screaming pain would be appreciated. Every Doctor I've seen has told me to "lose weight, exercise and stop complaining". Is that realy all I can do? I do not have insurance, but I am in a pain study program through our PCP's office Would really like someone to talk to who knows what I'm talking about.

momma73

Posted by @momma73, Aug 7, 2011

Hi catherineb,
How are you ? fibro and depression comes together but i also have anxiety(caused from my son losing a limb) and now my doc thinks something wrong with my bones.my ankles hurts 24/7 and crack now my legs starting to swell bad. we thought could be the lyrica but i slowed down from taking it from 3 x's a day to 1 day. and im still swelling. and i have recently applied for ssi as well go to my first appointment in 2 weeks. My doctor has told me to excercise.

catherineb

Posted by @catherineb, Aug 7, 2011

Having a good day today, feel like I've been hit by a truck again, but just a pickup and not a semi this time. LOL. I do have some swelling but have been told in the past that that could be from the congested heart disease. I take a diuretic every day along with BP meds. I was diagnosed with anxiety disorder when I was very young, so I take Xanex 3 times a day. I also take muscle relaxers which seem to help with the stiffness and pain. Before I lost my insurance I was on a lot of meds, but now I can only afford to take the BP meds, xanex and muscle relaxers. I eat over the counter tylenol like it's candy. The pain study I'm on seems to help with the tension head aches and sometimes the aches, but I don't actually know what it is I'm taking.
Sorry to hear about your son. That would be so difficult to deal with. My 1 year old grandson lives with us and it is getting more and more difficult keeping up with him.
My pain is mostly in my arms, hips and legs. It is so hard thinking I can just get up and do what I want to do and then realizing once I get started I can't finish it. Hope you have a good day and good luck with you S.S. appointment..

77goingon35

Posted by @77goingon35, Aug 7, 2011

Catherine, have you seen a doctor specializing in arthritis? A good doctor will know exactly about your pain. There is a drug called LYRICA that helps with the 'Fibro.

fibrosufferer

Posted by @fibrosufferer, Nov 22, 2011

Lyrica is not for everyone!! It did not help my Fibro and it made me very hostile!! 🙁 Cymbalta didn't help either!!
All that helps me is occasionally taking a Vicodin...and bc of the idiots that abuse this drug...I'm not able to get a regular perscriptions for it 🙁 I HATE CHRONIC PAIN!!!

77goingon35

Posted by @77goingon35, Aug 7, 2011

Catherine, I am so sorry for all you are going through. I too have Arthritis, Fibro, and dealing with periphiial neiurology due to the chemo drug I took for my breast cancer. It effects my hands and feet. Lyrica is expensive but if you buy some Glucosamine/ Condrotin 1500/1200. I take two in the morning and two at night. It may take a while for it to start working but don't stop taking it. I have taken it for 15 years as suggested by a
Rheumatologist. Excuse my typing mistakes, my fingers have a hard time hitting the right keys. I used to be a good and fast typist but now I have to keep going back to correct.
If you get on SS and get Disability you may qualify for medical benefits. CHeck with your county social services also.,

CatherineB likes this
catherineb

Posted by @catherineb, Aug 8, 2011

I think you typing is great.. I used to be able to spell too, but that has gotten lost over the years. My husband has periphial neuology in his knee because of the chemo and radiation treatments from his cancer treatments too. At least I think that's what they called it. He has been on S.S.D. for over a year now. If I can get a Doctor to say that I am unable to work I can get assistance. But since I don't have insurance I don't have a Doctor that I see regularly. The Doc I see now is getting ready to retire, he only charges me $80.00 per visit, but doesn't want to get involved in a "complicated case" He wouldn't even prescribe a parking placard for me. I see the S.S. doc Tuesday, I'm not expecting to be taken seriously, but we never know. Maybe I will get lucky and he or she will really understand that I can't work, even though I wish I could. I loved my job, but I couldn't physically do it any more. I haven't worked since March of 2010 and now all our savings are gone. Worry, stress and pain it's a vicious cycle. Hope you have a good day. Take care and thanks for friending me.

beachwalker

Posted by @beachwalker, Aug 7, 2011

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motanurse

Posted by @motanurse, Aug 7, 2011

Anyone w/fibro will tell you that it's not particular,Young old thin heavy,makes no difference,it's very painful,I'll be glad to shre about it.

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honeybee6636

Posted by @honeybee6636, Aug 25, 2011

Its wearing me down...........I want to be normal again

tiredofpain

Posted by @tiredofpain, Oct 9, 2011

I would love to me normal again also, but I don't see any chance of that happening unless they find a cure.

birdntroutlady

Posted by @birdntroutlady, Apr 27, 2012

You need to find a doctor. I see a neurologist and he started me on gabapentin. I only take 600 mg/ day and some of his patients are up to 3600 mg! I am exercising and getting some water therapy also. That gabapentin really gave me hope. I had thought I might have bone cancer I hurt so badly. Just wanted to stay in bed or on couch. Pray and hang in there.

inseine

Posted by @inseine, Aug 8, 2011

I have been following Dr. Rodger Murphree's Fibro Program and feel much better. Go to treatingandbeating.com and order his book on treating Fibro and Chronic Fatigue. I have found using natural supplements helps me much more then any prescription medications I have tried in the past...toooo many side effects from prescription meds that are the same as the symptoms of Fibro. Hope this helps ~

constantina09

Posted by @constantina09, Aug 16, 2011

Hello everyone, I totally understand what everyone is saying about the pain and the depression. Currently I am 20 years old and was diagnosed with Fibro when I was 16. For about 6 years prior to being diagnosed I went from doctor to doctor being told that nothing was wrong with me and I just needed to stop making things up. (That obviously did not help with the depression that I was already facing.) When I was a senior in high school I decided to do a presentation for one of my classes on Fibro because I wanted people to understand what people with Fibro go through. I did not want any sympathy from the kids that I went to school with I just wanted them to understand that just because I look normal and act normal does not mean that I am. The psychologist that I go to took my presentation to a meeting she was talking at and wanted to share it with other psychologists. I understand what you guys mean when you say that doctors don't always know what Fibro even is. That part really SUCKS!!!!!!! I have tried Lyrica in the past but it did not work well for me so currently I am not taking anything to manage the Fibro, which once again SUCKS!!!!!! I am praying for you all and hope that relief comes to everyone dealing with this.

honeybee6636

Posted by @honeybee6636, Aug 25, 2011

I also suffer with the same issues.......for a very long time. Its really hard, I want to try medications but I am afraid it will just make things worse.

tiredofpain

Posted by @tiredofpain, Oct 9, 2011

How can you stand the pain. It is hard to get other to understand because we look normal, I think my depression has gotten deeper since my diagnoses because I have had so much heartache in my life and I ask myself what more do I have to be put through in my life, haven't I suffered enough. I would love to read your presentation if you still have a copy of it and it is something that you can e-mail. If it is something you can e-mail could you e-mail me a copy to gdmixon@yahoo.com. Maybe it will help me get others to understand.

constantina09

Posted by @constantina09, Apr 30, 2012

I am just know seeing your post. I will try to locate my presentation. I did have it saved on my computer, but of course my computer has been giving me problems and a lot of my files were deleted. I know I gave a copy to my psychologist for her to use with some of her other patents I will see if I can get her to make me a copy and I will send it to you as soon as I can.

birdntroutlady

Posted by @birdntroutlady, Apr 27, 2012

Ask your doctor to let you try Gabapentin (Neurontin). I can't believe how much relief I got. I am also currently having some water therapy and that helps also. When that stops I am going to a nearby indoor "heated" pool for exercise. Moist heat really helps. Work some, get some rest and work some more if you can. I pray daily about this and I really think that helps also. My husband has been a big help. Someone comes to do my heavy cleaning now like vacuuming, mopping and dusting. I realize I have my limits to avoid the pain. Good luck to you and peace be with you and your family as they will deal with this with you also.

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constantina09

Posted by @constantina09, Apr 30, 2012

How long have you been on the Gabapentin? They put my grandfather on this medication and it made him really tired and he slept a lot. I don't know if that is a good comparison to make because he had also had a stroke and some heart problems. Is this a problem for you? Oh the "heated" pool sounds really nice! It is important to know that it is ok to ask for help, and to know what your own limits are. God bless you!!! I also believe that praying is a big help! God knows better than any doctor what we need. May the Lord bless you and your family.

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