Welcome & Introduce yourself to the Fibromyalgia/CFS Forum!

[dustybrown]

Hello and welcome to the Fibromyalgia/CFS forum on MedHelp. This forum is a place for people to come and share experiences with FMS and CFS. Some of you may have a diagnosis from your doctor, some of you may be seeking an answer for undiagnosed symptoms and some of you may be a relative or friend of one who is suffering. This is a great place to learn more and to gain support from others who suffer as well.

In addition to the community here, MedHelp also offers tools to help you and your doctor in your road to wellness. Fibromyalgia and CFS can be so intricate and can have so many different symptoms. Due to this, it is very helpful that MedHelp offers health trackers for us to utilize. We can track our progress and especially our flare ups. Below are just a few trackers that I find useful.

• CFS/FMS Tracker - http://www.medhelp.org/land/health-trackers
• Pain Tracker - http://www.medhelp.org/land/pain-tracker
• Mood Tracker - http://www.medhelp.org/land/mood-tracker
• Weight Tracker - http://www.medhelp.org/land/track-weight-loss

MedHelp also offers a plethora of “encyclopedia style” information available through the Health Topics tab at the top of the page. If you follow the links below you can learn more about Fibromyalgia and CFS, both topics of which are available on MedHelp.

http://www.medhelp.org/medical-information/show/124/Fibromyalgia

http://www.medhelp.org/medical-information/show/636?section_id=27670#sec_27670

I urge you to introduce yourself below and tell us a little about what brought you to the Fibromyalgia/CFS Forum. Again, welcome to MedHelp and the Fibromyalgia/CFS forum!

Sincerely,

Your Community Leader,
Dustybrown

[Suzyhomemaker321]

I am trying to find something for the pain. I have tried all of the medicine that is suppose to treat fibromyalgia, but I had to stop taking them due to not being able to breathe. Can anyone give me some advise on what medicines to try to help with the pain. I am desperate and hurt all the time!!!!

[Smellycat100]

I have fibromyalgia, neuropathy, arthritis in every joint, enlarged liver and spleen, multi nodule goiter, lobulated uterus, migraine headaches, diabetes, my body will not store vita D, magnesium or calcium. I could go on butif that is not bad enough,  I am now losing my teeth. Not from cavities,  they are just breaking off at or below gum line. This started about 4 months ago. I had to go to an oral surgeon because my dentist said he couldn't help me. The infection was all the way into my sinuses. Anyway, I have lost 2 in 2 days. I woke up this morning and realized thatI had something in my mouth. It broke off in my sleep! I don't have gum disease, they are just snapping off. I lost 1 just brushing my teeth! I have 8 teeth and my mouth is mostly roots below the gum line. I am ashamed to go anywhere and when I do , I don't talk or smile. I can barely eat because I don't have any teeth that match up. Mostly I eat soup but I have not lost any weight because I have a slow emptying stomach. I eat once in about 24-36 hours. I am going to start next week getting tested for autoimmune disorders. All of this has happened to me in the last 5-6 years.

[Smellycat100]

I have fibromyalgia, neuropathy, arthritis in every joint, enlarged liver and spleen, multi nodule goiter, lobulated uterus, migraine headaches, diabetes, my body will not store vita D, magnesium or calcium. I could go on butif that is not bad enough,  I am now losing my teeth. Not from cavities,  they are just breaking off at or below gum line. This started about 4 months ago. I had to go to an oral surgeon because my dentist said he couldn't help me. The infection was all the way into my sinuses. Anyway, I have lost 2 in 2 days. I woke up this morning and realized thatI had something in my mouth. It broke off in my sleep! I don't have gum disease, they are just snapping off. I lost 1 just brushing my teeth! I have 8 teeth and my mouth is mostly roots below the gum line. I am ashamed to go anywhere and when I do , I don't talk or smile. I can barely eat because I don't have any teeth that match up. Mostly I eat soup but I have not lost any weight because I have a slow emptying stomach. I eat once in about 24-36 hours. I am going to start next week getting tested for autoimmune disorders. All of this has happened to me in the last 5-6 years.

[LilmelTy]

Hello my name is Melissa. I was 20 when diagnosed with fibromyalgia and I started having symptoms at 16. Now at 26 I'm reaching out to others trying to find any drug free or natural ways that have successfully treated thier symptoms. Any suggestions would be appreciated.

[Supermonkey]

Hi my name is Sharon , I also have fibro dx about 15yrs ago probably had 20yrs. Now all the joints I complained about years ago have arthritis, neck spine and hips. I have tried many meds and still in constant pain.I work full time which is hard don't let this disease destroy your life , stay positive go to pain management if your doctor isn't helping enough. Get a 2nd option or a 3rd. Best advice I can give is stay active it helps

[Ellla66]

Hi to you all, I'm 49 and recently diagnosed with fibromyalgia.Also have serious constant anxiety and occasionally depressions. What I can share here I had responed to cymbalta very well but insomnia is in my case absolutely unbearable and poor sleep triggers many unpleasant symptoms.Cymbalta has a very bad impact on weight gaining which also in my case is not good.For fibromyalgia pain amitriptiline was really good(less effective than cymbalta).
Because of weight gain enormously caused by cymbalta so that it stayed even with amitriptiline(before cymbalta wasnt affecting weight much), I've been prescribed wenlafaxine for anxiety and associated depression.
My fibro pain has stabilized and is bearable and I guess I got to use to it as it is something I can name..I guess it helps a lot as well.
Hopefully pain will not build up that much anymore then..
That's nice not to be alone with symptoms though:)kidding, wish to everyone feel better.

[hermitess]

Hi everyone. I'm a 39 year old female with Fibromyalgia, migraines and other super-fun, unrelated pain-causing stuff. ;)

I don't usually do forums. I tend to like real-time chat better, but it was suggested to me that I join some support forums for chronic pain... so here I am. Nice to meet you all.

[carolinasnyder]

I am a 40 yr. oldd mom of 2 who has recently been diagnosed with several "diseases or issues" I have depression, anxiety, chronic fatigue syndrome, fibromyalgia, bursitis in my left hip(only)  a herniated disc (l5s1), joint pain with a knee replacement @ 30! Youngest one my doctor ever did without injury he said. I'm on a lot of meditation of course, go to physical therapy and the chiropractor. I still suffer...... Minot sure if this could be the right symptoms for here or not. Even with being diagnosed isn't there anything we can do? Oh, and the  long term use of prednisone and Lyrica made me gain weight! Anyone think this may all be connected? I can't remember anything with out writing it down or setting an alarm...which is why I started this to begin with........

[TahoeJuls67]

Hi, I'm Julie, and I'm new to MedHelp, and new to this Forum. I've just recently been diagnosed with Fibro and am still just taking it all in. For years I've had a number of symptoms that I had no idea were related under this one umbrella.....migraines, fatigue, occasional forgetfulness, all over body aches-like I had a constant beginning of the flu, low grade fevers with no explanation, IBS, back problems, knee problems.... OMG, I thought my body was just out of control, that I was aging at an unusually rapid rate, or something crazy. Several doctors treated me for each isolated problem, but no one put the puzzle together for me until my Kaiser primary doctor finally looked at my history, and listened to my constant complaint of the fatigue and body aches, and he referred me to a rheumatologist. After a slew of lab tests, thorough exams, neuro and cardio exams... I was finally diagnosed with Fibromyalgia.
    As the doctor asked me all of the questions about symptoms (things I had never even thought of) it all started to come together, and I thought "OMG, she finally gets it!" She knew exactly what I had been feeling and suffering through all of this time! She has referred me for acupuncture, that I'm in the process of getting scheduled. I just joined a gym so that I can get into a low-impact exercise and stretching routine, and our entire family has decided to take this as an opportunity to clean out our pantry and fridge, and opt for healthy options. I will not let this define me or label me. The diagnosis for me, was just a confirmation that what I was feeling was real! And now, I can move forward and learn what to do about them!
     Its not a walk in the park. I'm in pain every day. Getting out of bed is a struggle. My body aches, I'm tired, I'm nauseous from the pain and the fatigue...my knees hurt...my back is screaming. I get needles and knives through my legs and feet, and my IBS flares up almost daily. I have to try to take my morning shower, get myself together, and go to work when I'm scheduled, keeping my secret...I've only shared with a few co-workers that I'm close to. Not ready to give in yet, I push myself to keep going, afraid if I give in, it will overtake me.
      I thank God each and every day that He wakes me up, that He stands by me and gets me thru my day. I pray for His strength to keep me going, and His comfort when the pain meds give out halfway through my shift. My faith keeps me going, my love for myself, and my love for my family and wanting to show my kids to keep fighting no matter what. NEGU - Never Ever Give Up!

[chocolatechipcake]

Hi everyone.  I'm a 42 yo woman and single mother of 2 teens.  I have PTSD and major depression from years of childhood abuse and neglectful parenting. I am currently on antidepressants and go to therapy which have saved me.  

Although I am now a successful career woman and have control over my life, overall my life has been a very stressful one.  It is the constant stress over years and years that I believe triggered Chron's Disease at age 33 (no sx prior to then), then last year neuropathy followed some months later by fibromyalgia.

Over the past 3 years my ability to exercise steadily decreased.  I can go to yoga and walk but that's about it.  I used to run 10K trail runs before all this started.  I experience episodic musculoskeletal aching pain.  Sometimes a burning sensation from my lower back down to my mid thigh.  Headaches have started recently.

I am interested in ways to homeopathic/natural ways manage fibro pain. I don't want to take a bunch of pills everyday.  So far, yoga helps even though I have to push through it.  The breathing and blood flow helps at lot.  Sleep also helps so I sleep a little more than I used to.  

Glad to be here and look forward to your posts.

Abby

[cdfoley]

Hello everyone.  I have a brother who is retired and suffering fibromyalgia that is making his life miserable.  He does not drive and does not have a computer, but I had the idea to join an online community and, as his surrogate, find out about possible treatments.  We would like to find a good doctor in the Fresno area. So far the general doctors have prescribed pain killers and MORE pain killers.  He is in a fog most of the time.  I am so worried about him.  Thank you for any ideas you have for 1) getting me up to speed quickly on this condition, and 2) finding a doctor who has been successful with treatments.
Carol

[Fibrojen]

Hi my name is Jen. I have been diagnosed with fibro for about 30 years. Ever since it was a made up diagnosis. I have tried just about everything. Antiseizure meds. like neurontin, antidepressants like elavil, I've had injections in my spine, I've had acupuncture, which does help by the way, and I've swam thru the natural herbs and vitamins. I've spent months in bed feeling scared and sorry for myself. Oh, and the money I've wasted is sad. I found a doctor that agreed to put me in her pain management program which really amounted to a once a month mandatory appointment to get MS Contin and have regular drug testing done. I was in this program for almost 10 years. I started taking MS Contin at about 50mg twice a day, I think. It's been a while. It worked great. In fact, the medication causes constipation which worked well for me because I have spastic colon..I followed the rules for a long time, but I got tired of going to the doctors every month. I had to follow all the rules, regular checkups, mammograms, colonoscopy, ect. If I didn't I would not get my meds., so I started getting tired of it. Since I felt pretty good I started to get a little cocky and decided it was time to get out from under their thumb. I talked to my doctor, whom I'm very fond of, and decided to lower my dose. I eventually went down to 10mg., once a day. It still worked pretty good. I was kinda hoping that my body had just unlearned all the pain. She cautioned me. She remembered the old whiney me. Anyway, over my Christmas vacation I weaned myself completely off the morphine. It wasn't too hard. Maybe because it was such a low dose. The plan was to start on cymbalta after, which I did. There were a lot of side effects, terrible gastro issues. Terrible! I work full time with the public, that was hard. I stuck with it and at about 4 months, the side effects somewhat lessened. I started taking probiotics and it really helped. But I never liked how my head was. I was always in a fog, always forgetting. Just a space cadet, I'm prone to that anyway, I didn't need that and eventually after almost a year I decided I had to get off of it. That was harder to get off than the morphine! All of the side effects x3! It took well over a month!
I am off everything now and the pain is back with a vengeance. I was very lucky to have the 10 years of relief. The one thing I am comforted with is that I'm pretty sure I'm not dying, and I also know it's not just in my head. I'm sorry that there are so many people abusing narcotics because MS Contin at a low dose, time released is the most effective relief I've had. It made my life possible.
I work at a physically demanding job on purpose so that I will get up and get going. I also work with the public to keep myself from isolation. Something that a person wants when they feel sorry for themselves like I did. I see there has been progress in research and I'm hoping that there will be a cure for this horrible disorder. It's a terrible curse and I hope they will finally tell us what it really is! In the meantime I'm hoping to find some relief that won't require me being judged constantly. I'm going to look into Chinese herbs and keep reminding myself that I'm not dying.

[Howdycuz]

I have EXTREME Skin Sensitivity ALL OVER- (Nearly always at Night-)

It's like having a fever all the time.  My skin tingles, burns, itches and I can feel the minutest particle in bed! (I hardly get any sleep now which aggravates my Hypothyroidism and Fibromyalgia.)

It's driving me crazy!!

Have any of  you found any more info and / or relief?

I Sympathize with fellow sufferers and would appreciate ANY help you can offer!  (I'm near Houston, TX if you know a really good Doctor-)

[Cookiegregg]

I'm just now reading your post. I would love to have a copy of the letter you have.
I hope you still read this as I do not know how to reach you.

Hope you're doing well.

Liz

[Tiredsleepymama]

Just here looking for possible answers at this point.  No dx as of yet.

[Zoie1025]

I'm 32 yr old female and I was diagnosed with FM 5 years ago and my life has never been the same. I don't feel like this is my body anymore that used to love to work out and be active now I feel like I live in a painful prison. I'm in pain everyday all day my flare ups have me on the floor or the couch not moving. I get swelling in my hands and feet, sharp shooting pains like a knife, dull achy pains, sometimes I can't walk or hold a pencil even if my dogs sits on my lap it hurts. I spend a lot of time alone and in pain I can't work. I used to be a hairstylist but I couldn't hold up a blow dryer anymore or stand on my feet that long. Just a hug can be unbearable at times. My arms, legs, feet, back, neck, shoulders, fingers fingertips and toes all have pain. The dull achy hurts but the sharp shooting voodoo pains make me yell out in pain. I mainly get those pains in my hands my palms and it shoots up to my ring fingers and I get them in my ankles too. I have gerd, epilepsy, I'm extremely sensitive to everything (smells, lights,sound,medications) started having jaw problems as well and lately my right ankle has been giving me a real problem it's so weak and hard to put pressure on it or walk on it I can't even be barefoot. Just doing some cleaning and food shopping feels like I was at boot camp for 3 days. This disease is a very lonely one know one understands and look at you like your full of it. I wouldn't wish this on anyone.

[Prairiechild]

Hello everyone
I feel very helpless reading those that have been affected w/ fibromyalgia .
I have been diagnosed in Dec 2012.I have taken it upon myself to be my own advocate of my health.in my youth I had a lot of colds, neck spasms, balance issues and memory/ learning problems
After having albalation for my endo, I starting feeling fatigue and had libido problems.The last 3 years I began running out of energy and was having painful heavy legs.
This January I caught a cold and was stressed over Xmas.I went to work and knew it wasn't good.I couldn't feel my legs and was in a brain fog.i couldn't get off the couch for 3 months and don't remember much of Jan-mar.I have memory Loss ,can't spell well,can't problem solve,don't rember to much spoken to me.I also have TMJ,raynauds syndrome,lazy colon and had multiple bladder infections,painful neck spasms, headaches depression and numbness in finger/ legs.Weakness in my limbs,back pain ,lesion on my back,cyst on my liver , tremors .I have been given steroids taramadol ,pain killers baclofen ,flexeril , Valium etc. I do 15 mins of yoga 2x a week, take MSM,vit b , vit d, omega 3, calcuim w/ magnesium as well as a fibro spray fr Nutters.
I don't want to take gabetin or any else that I feel isn't appropriate for me.I haven't worked since January my pain has improved greatly. I do a lot of research and find what's right for me.I have had physio, laser, massage and recently Botox in front of my ear for pain from TMJ.
At night I take marijuana for pain / sleep etc. I walk when I have the energy.

[Messyblonde]

Hi everyone
I think I have cfs/fibro. I was originally diagnosed with low corsitol levels (very low) and put on steroids. I'm also low in growth hormone (which I isn't literally growth) it's an energy type of hormone. I'm intolerant to bright lights, heat, constantly tired, can sleep on and off for up to 16 hours a day. Sleep is disturbed. Am in pain with neck, back, knees, elbows, hands, have balance issues, ibs, migraines. The lower back pain is terrible. It's hard to bend and shower my hair on my own, so it's easier to do in the bath. I have numbness in my left hand, and even having a bath can be exhausting. I could go on and on but I won't. I'm being referred to a rheumatologist, to see what they think, am already under an endocrinist. I have a son aged 14 who has Asperger's syndrome and doesn't understand why I'm so ill and need to sleep so much. I take Tramodol for pain, but still find co- proxomol better. My sister is lucky to still get these on script. I take sleepers and anti-depressants, but haven't heard of a lot of the meds mentioned on here....I'm being screened for Lupus at the mo, but if that comes back ok, then it will seem to be cfs/fibro........I feel for you all and am in the Uk. I'd like to get to know some ppl that understand

[sammibreal]

I am 32 and was healthy then in November all went crazy. IM STILL CONFUSED ON WHY AND HOW THIS HAPPENED,.

[bamafan1983]

Hi, my name is Tammy. I have Fibro and have for about ten yrs im 43 now. My mom had fibro for 30 yrs and up until she died she used to rock back and forth and pray for relief. I finally got tired of the pain and went to a Pain Management Specialist. I found out I also have Degenrative Disc Disease and Occipital Neuralgia. I found that the pain meds do not really help the fibro but they put me on a muscle relaxer called Xaniflex that really helps the fibro. I also get nerve blocks that help the pain tremediously. I would suggest a Pain Management Specialist to anyone who suffers. Mine has been a God sent and at least I'm not so depressed now and have part of my life back.

[counsellor34]

Hello everyone,
This is the first time I have used an on line forum for support so I should like to thank you all in advance if you find you can help me out, whether you have had the same or similar symptoms or know someone who has experienced them.  I was diagnosed with Rheumatoid Arthritis ten years ago and then with Fibromyalgia, followed by Sleep Apnea. You will realise by now that pain is not a stranger to me, but now I find I am really struggling with it.It takes all of my energy to stay awake and being alert is a thing of the past. I am on several medications for the RA and for the Fibromyalgia as well as using a C PAP machine for the Sleep Apnea.  This past week I have been plagued by pain in my left shoulder blade, which travels up to the base of my head and at times it seems to radiate through my left arm to my wrist. It is really disabling and stupidly I have not contacted my Rheumatology department, thinking the pain would abate-but now of course they are not contactable for several days because of the holidays ( I live in Scotland so it will be Wednesday at least before they return to work). Is there anyone from the forum who can help? I would be so grateful. Thank you.

[mprao999219]

Hi, I am MP Rao, 60 from India, in Homoeo service since 1987.Those who need any medical check up for all of their illness may mail me to : mp_rao999***@****. I am confident that I can give better and healthy life for those who approach me.

[alex426]

My name is Alex and I've had FM for about 4 years.It started in January 2006, when I couldn't lift a tray of 6 coffees at church! It was 2 weeks before I went to the Dr's because I thought it would pass, and he put me on Ibruvin which didn't do anything so after a month I went back and he prescribed Diclofanic which didn't seem to do anything either then August that year I collapsed at home and went to the hospital with a friend and her husband (who carried me downstairs as I couldn't put any weight on my left leg!) Not long after that the energy loss kicked in and I spent a month mostly in bed only to get up to go to the loo or make a cup of tea! Christmas that year was pretty miserable for me as I kept returning to the Dr's with no joy and support to where my strength and energy went.It came to a head a week or so after Christmas when I couldn't take any-more, I demanded in my broken speech -as I was so breathless, that I was not leaving the surgery until I saw a specialist as this was driving me mad! And there and then he went on his PC and got me an appointment for a few days time! This time I went with another good friend to the hospital-and the Dr there diagnosed me with FM. When I started crying, the Dr was worried she upset me which I replied "Oh, no, I'm just relieved to have a name to this thing as I thought I was going mad! I was on Tramodol for the first 18 months but couldn't get on with them as I felt I was on auto-pilot 24 7and was extreaminly tired all the time.I stopped taking them because I thought you can't monitor a condition with the side affects being like one of the symptoms. I feel better now but everything takes twice as long and I have to pace myself and I'm fortunate enough to have great friends because they have seen me go downhill and found a good local FM support group-It's great and friendly and everyone is in the same boat, not in competition but with support, tips and advice. So remember if your having a crap time of it, there is a light at the end of the tunnel!
Alex from Kent

[Shawnas]

Hi I have lived in NJ since I was 10.  I lived in Sussex county, NJ  until last year when I moved to Newark.NJ.  We have been here for 1 year exactly and I have realized this is the worst I have ever felt.

I had severe neck pain in 2007-2008 I had gone for a mri on my neck.  I was dying, I have lived w chronic pain since I ruptured my first disk at 20.  I have had sciatica since I was 14.  I was tested for arthritis when I was young, and it came back negative.  I had had horrible menstrual issues, including fibroids and surgery and ablation(s)..

Then at the worst when I thought the neck pain was going to kill me, I had a seizure grand mal on easter 2008.  I was rushed to the hospital and diagnosed with a meningioma (tumor of the lining of the brain)  basically it just grows and grows smashing your brain and killing it by cutting off blood, i think  So after I have a crainiotmy(SP), they removed a tennis ball sized tumor,  and sent me home to deal with right side nerve damage, memory loss its somethinger other amnesia where chunks of time are just gone, and I start to feel better and bam...I have seizures, so now I have seizure disorder and epilepsy, along w all my ruptured disks, sciatica, female issues, with the excessive estrogen I make, it caused the tumor to grow rapidly  as my female issues worsened (estrogen can cause the type of tumor to grow.  Now I am right handed, but my left frontal lobe is partly dead.

I have had to learn to adapt, its like my gate, self control, mouth police portion of my brain is gone,  so now I have to really focus to think all the time, and then I would have days I couldn't focus I was fuggy...kept going back to my gp and complaining about my neck and shoulders, which have hurt my whole life, but they thought it would get better when they removed my tumor.  

MY Neuro for my seizures thinks I have nerve damage in my whole body, and I suffer from migraines, headaches whatever constantly since the brain surgery..it just varies as to intensity from dim background noise to i will kill anyone who talks to me our touches me, and i am nasty..and those are the days I hurt the  most.

My gp dignosed me with fibro..one day he was just looking at me and thinking, ( I have been going to him since I was 17 and I am now 42)  and it was light a light turned on in his head and he said you have fibromialgia...this  was after the third Lymes disease test I had..and he pulled out a book and showed me step b step why I had it, and it explained everything.

I truly believe I may have had fibro my whole life but the brain trauma brought it on full force.  So now I am stuck in Newark and haven't been able to function at all, and boy is my fiancee frustrated, he just wants to fix me help me and what can I say??  I am very lucky to have him.  Because he not only has to deal with my moods, pain level etc..stress triggers grand mal seizures, so he had to constantly be aware of how I am feeling.  I am feeling I cannot take this pain anymore, and I want to be able to go for a walk!

Thanks, Shawna
Shawna