BellaOnline Forums Health and Fitness Fibromyalgia & Chronic Fatigue Syndrome interest in success stories

Hi, I am new to this site. I am very interested to hear what has worked for people with FM (not advertising products). Also how and when did your Fibromyalgia present itself to you?
I am a 54 year old woman and have had 2 car accidents, one quite serious. I have managed for years in pain, but still living a relatively active life style. 18 months ago though I had to give up work as the pain and fatigue have been overwhelming. One of my problems is that my spine is quite unstable and rotates out of alignmenton a regular basis putting my pain and fatigue levels through the roof. I do regular physiotherapy, massage, stretching and core strengthening exercies, but nothing has helped. I am now also attacking the problem from a nutritional and cellular level to see if that may be contributed to the underlying reason that I have not improved/healed.

I am very interested in hearing people's success stories. Even if that means that you are 10% better or 50% better. Every little bit helps!

Take care

Diani

Hi Diani,

Welcome to the site. I'm new here too!

Mine is a very long story, so I'll give you a quick overview on what I did to heal from CFS and Fibromyalgia.

I had a terrible case of Food Poisoning that nearly took my life and left me with bowel infections. My life changed drastically that day. Even though the infections finally left, I struggled with CFS and Fibromyalgia on a very severe level for years. I had incredible pain and many many days the fatigue was so great that I could only get out of bed to use the washroom. It was tough on my relationships and I was completely unable to work.

I've come a long way baby! There was no quick fix for me. However, I took the whole person approach and chose to never give up. I took serious steps to support myself in the areas of body, mind and spirit.

The holistic medicine route was a large part of it (though I believe it was only made most effective because of what I was doing to support myself in the other areas). I went to a naturopath, massage therapist and chiropractor regularly. I learned more effective ways of meditation and prayer for healing. I chose postive thinking and was able to avoid depression by not allowing myself to think negatively. I focused on letting go of stress. I read inspiring books when I was able to concentrate and chose uplifting conversation.

I really looked at my life and decided that I would learn from what I was experiencing. I focused on what I could do, rather than on what I could not do. I learned how to get my self-esteem from knowing my value, rather than on my productivity. (I was a high productivity person before).

I found purpose in my situation and began to think of my situation as a rejuvenation period instead of something horrible that had happened to me. I allowed myself to dream about what I would do when I got better. (If you've heard of the book, "The Secret", then you'll understand that I applied those principles.

I believe myself to be healed from CFS and Fibromyalgia. Once in a while, some of the old symptoms will rear their ugly heads and I simply don't give them too much creedence. I do what I need to do to deal with the pain (even if it means a painkiller - which I hate to take). I get some extra rest and focus on what gives me meaning and purpose. I decide that the temporary blip does not mean it's all coming back again. It's just my little warning sign to pay attention to what is happening in my life. Sometimes, it's my period or just the weather change!

Today, I am living a life which I am thankful for. There's no way I would fit the criteria for CFS or Fibromyalgia again. (Yes, I had the "official" Dr.'s diagnosis). I wouldn't want to go through all that again, but I know I have grown tremendously from the experience.

May my experience also encourage you that we can be free!

If you want to hear more, I'm happy to share more. I wish you all the best on your journey of healing.

Warmly,

Tami

My cousin manages her Fibromyalgia with guaifenesen (I don't know if I'm spelling it right--it's the main ingredient in Mucinex). She said there are support groups online that offer information on how to use it properly. A friend of mine who's a doctor says Mucinex is considered a "benign" drug, in that it's fairly easy on everyone and doesn't cause a lot of interaction problems. My husband has to take it twice a day for his lungs (its primary effect is to keep your mucus thin, and you have to drink a sufficient amount of water while on it, which is also good for you). I hope this info helps

I'll be upfront with you... I have seen very few 'total' success stories, and the ones that I have seen, and where the success lasted more than a couple of months, all turned out to be cases where they'd been misdiagnosed with fibro and got better when their real problem was found. That said, though, I've had very good results with very severe symptoms with my current doctor.

How I ended up this way is... well, pretty much a novel-length story, and a depressing, frightening one, at that. I'll condense as much as I can and still let you know where I'm coming from, but if you want to skim or skip down to 'solutions', I'll split this into two parts and put a line of stars where I get to the things that have helped me, like so:

*******************************

HOW FIBRO/CFS AFFECTS ME, AND HOW I 'CAUGHT' IT

There is a tendency towards similar issues that runs in the female side of my family but requires a 'triggering event' to develop to anything serious, so until I was 25 I had only minor, occasional annoyances -- depressed immune system, tendency towards anemia, respiratory sensitivities, painfully tender skin, etc., all on the 'irritation' level -- and led a pretty normal life. Worked, went to college, went out with my husband, took care of my little boy, all with no problem. Then I had serious health issues when I got pregnant again, including Bell's Palsy a couple of weeks before I gave birth (a month early), and ended up, a month after my daughter was born, back in the hospital for emergency gallbladder removal. Botched surgery led to acute pancreatitis, and I was in a true hellhole of a hospital for three months, nearly died several times, and the same people who botched the first surgery ended up splitting me open from sternum to navel, rooting around a bit, doing nothing at all, and leaving me with a 2 inch deep gash that promptly became infected. By the time I managed to stay undrugged and lucid long enough to realize I was going to die there if I didn't leave, I'd also acquired a broken collar bone, an infected IV port which ran straight into my aorta, and severe pneumonia.

I expected to die in the hospital I transferred to, but at least there I could see my babies before I did, and I would be _home._ The new hospital promptly administered massive antibiotics, IV nutrients (I was so malnourished from the pancreatitis, that my hair and nails were falling out), and 4 units of blood, they managed to get me stable enough to surgically drain my lungs, and much to everyone's surprise, I actually lived. Recovery took a year and half a dozen semi-surgical procedures, then I promptly fell and fractured my wrist in a particularly nasty way, and had to have pins in for 12weeks. Pins happened to be pressing against a nerve, causing pain and damage, but removing them would risk shattering the tiny bones and I could end up with 20% or less functionality in that wrist. I'm a writer and an amateur artist... I decided I could deal with the pain. So after that was healed, too, I went out and found a job and started trying to get on with my life...

And it just didn't work. No matter how much I tried to 'get used to it' I never built up any endurance, never gained any strength. I was sick all the time. I threw up frequently and pretty much stopped sleeping. Energy was non-existent (as was libido, needless to say), and I hurt. I hurt everywhere, all the time. I thought maybe I just needed to get back in shape... maybe I'd underestimated what it would take to get there... and I'd liked going to the gym before I got sick. But before, when I went in tired and achy and not wanting to move, if I made myself do it anyway, it'd be hard and painful at first, but I'd soon start feeling better and by the end of my 50min work out I'd be full of energy and feeling bouncy and happy. After, though, no matter how long I forced myself to try, I never felt better. The pain never eased. I never 'woke up' from the exertion... instead, the pain just increased exponentially with every moment, the exhaustion became crushing and overwhelming, and eventually I'd just collapse, crying. Maybe worst of all, I didn't _recover_ from over-exertion anymore. If I'd pushed until I was sore and stiff before, I'd be sore for a couple of days, but if I kept working through those two days, I'd be over it fast... and it took about 2 hours hard workout to make me sore. Now, a 30 minute workout would leave me in crippling levels of pain, recovering from it would take at least a week, sometimes two, and if I tried to 'work out the soreness', it never, ever worked and instead just added to the pain and length of recovery. Needless to say, building any real muscle tone turned out to be impossible, and that, in turn, made the condition worse.

I also discovered the joys of fibro tender points, as they began to flare constantly and with knife-like intensity. It got bad enough that I _was_ crippled by it. A block's walk would have me staggering and limping, biting my lip so hard I drew blood to keep from crying from pain. My job, even though it was a sit-down tech support job, proved physically impossible, and I got fired for missing too much work. I'd never been fired before. I've held one other job since then, when the tech crash temporarily slammed my husband hard and we simply _had_ to have the money, and eventually I got fired from it for the same reason. Fortunately, my husband is able to make enough to support our family without me working, and has enough experience and skill that his unemployment was a temporary thing, because had I been a single parent at that time... well, I think I'd be dead and my kids would be with my mother, to be honest.

I had the typical experiences with doctors, of course. "There's nothing wrong with you, it's all in your head.... You're depressed, take these anti-depressants.... you're just fat, lose weight and you'll be fine.... I can't find anything wrong with you that I can fix, so you're just a drug seeker...." I believed them and hated myself half the time, resented their patronizing bullshit and hated _them_ the other half, and felt afraid, confused, and hopeless just about all the time.


*******************************
THINGS THAT HAVE HELPED


Eventually I found halfway decent doctors, got a little pain control...
Ultram (Tramadol, 50-100mg up to every 6hrs... it's non-narcotic and non-addictive, and for fibro patients who it will work at all, it tends to work very, very well with very few side-effects.) worked for me for five years, at which point I proved to be one of the 5% or so of people who could become acclimated to it after long-term use, and it stopped working... returning me to my previous state of useless agony. When I asked my doctor if we could try a different medication (after researching standard fibro treatments and finding out what had a good chance of working with the least risks), he basically told me that he absolutely could not, that no one would, that I just needed to learn to live with it, and treated me like a drug-addict. And this was a man who I'd respected, who'd I'd been seeing for 5 years -- during which I hadn't had a single change in medication. In fact, at the beginning of that time, he'd given me a scrip for 30 vicodan tablets for use with migraines... and I still had half of them. So I went doctor hunting again, had even more hellish experiences, some not-too-bad ones, and eventually ended up with the most wonderful doctor in the world, who understood perfectly when I broke down crying in her office out of sheer shock at being treated like a human being.

She kept up on all the lastest studies on fibro and cfs (as well as several other 'imaginary' diseases), and was willing to try things until she found something that let me live again, but first she ordered some seriously thorough blood tests on the outside chance she could find something that _was_ curable. Turned out that my vit. B levels were low, so she supplemented that with shots for a few months, and that while my thyroid function was in low-normal range, there'd been several studies that show that in people presenting fibro/CFS symptoms with thyroid levels in that range, supplementing to bring the numbers up into the mid-high level very often resulted in significant improvement. Theorized reasons varied, but my personal bet is that we have an issue with _utilization_ of the stuff that's in our blood... we may be producing plenty of it, but if we're only able to use it 20% as efficiently as a 'normal' person, then maybe it wouldn't be plenty for one of _us._ She also changed my primary pain medication from oral to a time-release patch, so I could avoid the 'dead times' between my last dose of meds wearing out and the next one kicking in, and added on a neurological-specific pain medicine called "Lyrica". It's specifically for pain caused by over-firing nerves, and studies have shown it decreases pain in about 80% of tested fibro patients. Side-effects can be an issue, though... sleepiness is the biggest one. Aside from the things my doctor has found for me, there are three things that are over-the-counter that I've found help consistently. 1)melatonin an hour or so before bedtime to ease sleep problems (and thus improve _everything!_), but in very _small_ doses. There's some evidence to support the theory that FMS sufferers don't produce adequate levels of melatonin on their own. Studies show that taking too much can actually make sleep problems _worse_, and that most effective dose is between 0.25mg and 0.75mg. So 250-750 MICROgrams... the smallest you can usually find are 1milligram tablets... fortunately, they're easy to break. If the dose is right, you should find it easy to drift off to sleep (but not impossible to resist, like sleeping pills), easier to stay asleep, and about a billion times easier to get _back_ to sleep when things disturb you in the night. You should wake up feeling refreshed and alert. If you wake up groggy, or have trouble waking up after a normal amount of time, or if you have bizarre, vivid dreams, this can be a sign that you are taking too much _or_ too little. Adjusting the dose can be tricky, but not too hard, and it's worth the trouble.

2)Creatine monohydrate. It's a muscle building supplement which is designed to flush the lactic acid, which builds up after a hard workout from your muscles. Lactic acid build-up is part of what causes the pain when you over-do things. In healthy people, it's flushed out naturally, mostly overnight, letting the little micro-tears that use creates in muscles heal up, too. That last bit happens in deep-sleep, and since we don't get enough of _that_... it's pretty easy to see how something designed to give muscles a hand can help. I found that it reduced my pain, if I took it beforehand, when I inevitably had to do something I knew was going to hurt me (taken at loading dose), and taken regularly (at maintenance dose) let me build muscle again... though slowly.

3)Finally, Devil's Claw Root reduces the number of sudden, random, severe muscle cramps that I have. It also eases general achy pain a bit, but mainly it just keeps my muscles from tying themselves in knots.

As far as prescription medications go, I've tried several. Ultram was the one I liked best, because while it worked it had no side-effects. Other than that, pain medications vary so much that you'd really have to try them to find out whether they help you or whether, if they do, the side-effects are worth it. My personal regime is 75mcg/hr duragesic patch, hydrocodone 10/350 every 6 hrs as needed for breakthrough, 1 time-release 50mg ultram a day, Lyrica 50mg in the morning and 100mg at night, and some sort of muscle relaxant at night (I get tolerant fast, so I rotate through three or four dif. ones), as well as the supplements/herbals mentioned above. I also take prilosec or similar for stomach issues, and 180mg Armour thyroid a day, as well as a liquid B-complex supplement. For the CFS, I currently take Provigil every morning, and it's been a miracle for me... I can finally stay awake for more than an hour at a time, and it's so much _fun_ being able to do things again! I also feel better if I don't eat potatos and do eat a cup of yogurt or drink a pint of milk each day, but whether that's actually useful to anyone but me, I have no clue. Listed in order of most beneficial, I'd have to say what works best for me, are: patch, lyrica, thyroid, melatonin, provigil, creatine/muscle relaxant/devil's claw (all tied equally, really), hydrocodone, everything else. Exercise that does help me now includes swimming, yoga, and weight training, but excludes high-impact or 'fast' things such as aerobics or kick-boxing. Shiatsu massage, as long as the person is familiar with our nasty tender/trigger points, is also helpful. Hydrotherapy massage is _wonderful._ Meditation can help, but honestly it (along with all forms of hypnosis, too) works best for short-term pain, not anything chronic. Oh... one more thing that has helped me a lot is getting either a bit of natural sunlight (about 15 min is enough) every day, or (during winter months) supplementing heavily with Vit. D3 and calcium. At least 900Mg of D3. However, this could be because I am an unabashed cave-dweller, and would avoid sunlight like the plague if I hadn't discovered by accident that I appear to be solar-powered. UVB-lights, such as used for some reptiles (iguanas, bearded dragons) at close range (we're talking under 18 inches, unfortunately) for an hour or so can do, in a pinch.

And that's about it, I think. I went from totally unable to work, play, think... unable to _live_, really... to, over the course of a year and a half, feeling good enough that I probably could hold a job if I needed to, and I certainly can do basic stuff around the house, play with my kids, swim in my pool, go to the gym and enjoy a good workout (though I still have to seriously downgrade my idea of 'good workout' and take care not to injure myself), and I've even recovered my long-dormant libido. Before I couldn't walk two blocks, now I can do a couple of miles easy. I fell asleep every couple of hours and felt exhausted all the time, now I still get tired ridiculously easily, but I _can_ stay awake all day and be functional, rather than all cloudy with exhaustion. I went from being a zombie to approaching the intellectual, knowledge-hungry, incurably curious, type of person I used to be back when I won all those scholarships and had such high hopes. I can finally take care of my family some, too, instead of just feeling guilty because they take care of me. So... while I _hate_ taking medicine more than anyone would ever believe, it's worth it to me. I tried natural and herbal methods first, of course... I've been a hard-core herbalist (though _NOT_ homeopath -- to be blunt, I honestly think homeopathic 'medicine' is the biggest scam I've ever seen, and have never seen a homeopathic 'success' that didn't have "placebo effect" written all over it) for over a decade. I still prefer herbal remedies where they work... but I have no problem with taking advantage of our modern pharmaceutical technology, either, if that's what it takes to be alive again. In my case, it did. In others, perhaps it doesn't... I did want to offer a different type of case-study from the ones I saw already here, anyway.

Well, this has run to novel length, sorry. I'd just hate to leave something out that might help somebody. I hope you do find something, somewhere that helps you, and the best advice I can really offer is that, no matter what, keep living. Don't settle for 'enduring'. Don't 'survive' this at the cost of your _life._ Make it fight you for anything it tries to take from you, and be proud of what you manage to hold onto... but don't feel ashamed to have a good cry sometimes, when you need to, too.

Best wishes,
Velvet

I know that this question was posted months ago, but I wanted to share something that has given me enormous relief. I have an old, ratty recliner that I didn't use much until I moved it into the living room while moving around furniture. Then, we put an electric blanket over it and plugged it in. Viola! The coziest and most comfortable chair in the world. When I know everything from tylenol to vicodain isn't going to work and my viatmin supplements and Lyrica just isn't doing all that it should be doing (or if I over-expended myself or have muscle cramps or if the cold is really getting to my muscles), I just sit in this chair for a while and at least I feel a bit better.

Just wanted to share. Pretty simple to do and what comfort!

Melissa

Last year at this time I was bedbound. I was seeing a rheumatologist at the time(he was late fired), and he had suspected fibro since Sept. but didn't give me a diagnosis or treat me until Jan. of this year. At that time he switched my anti-depressant from prozac to effexor xr. I had been taking prozac for several years to combat anxiety attacks. He told me it would take up to several weeks for me to see a difference.
Within one hour of my first dose I was up and dancing! I could actually jab my fingers lightly into my thighs w/o any pain, something I wasn't able to do for a couple of years. Unfortunately though it "leveled" out and the pain came back. But I'm no longer bedbound, I have tons more energy, I was able to garden last summer also. I've had to learn to pace myself and when I do I can get alot more done.
Success? Well, not 100%, but from what I've learned in the last year, that would be an unrealistic goal. But I do have a much better quality of life.

Hi Im new to this site.I was diagnosed with R.A. in 1986. I had so much muscle pain and fatigue at that time. I got up and felt like the worst case of flu ever.Slowly I got better.Pain left in muscles I slept alot but still worked .Now I wonder how i did it.The weather seemed to bother me .I also had trouble if I overdid like raking etc.I didnt let it stop me. I was a single mother who had to support herself.
My Father died in 1997.I was the only child a lot of stress settling estate etc. I started to have some problems then Rotator cuff, Headaches, heel spurs. I took lots of anti-inflamitorys . Celebrex, Bextra, Feldene and a few others.At this time I never complained about muscles because I thought it was part of the R.A. symptoms. my leg muscles would bind up just going from one side of the town to the other in the car .I had to stretch out legs like a runner when I get out of car .If I don't I walk like a penguin.I felt like I was really starting to go downhill .
In 2001 I met a great guy .We got married in 2003.He sure helped with housework yard etc.Then in 2005 I had backaches.(I have been a cosmetologist all my life so that wasn't anything new.)they had me in therapy doing exercises.that didn't work just got worse. I couldn't stand exercises. I started going to massage therapist that started helping went every week for a year.In 2006 I retired .I just couldn't work anymore the pain in feet (no cushion left in feet)my backache.I had an M.R.I. I was sure I had cancer of the spine because the pain just wouldn't go away.We move in May of 2006.We had started a new business developing a subdivision.(just got our first model up when the bottom of real estate market started falling out.) I went to a pain specialist .He gave me 2 epiderals. 2 weeks apart.I finally got relief from upper back pain. My massage therapist suggested to me going to her doctor. I had been taking darvocet and muscle relaxers. He wouldnt give them to me . I went and asked him for a Rheumatologist in the area. I hadn't been in a while to one. He gave me several blood tests. I was tested for R.A again. I was tested for several other things. He told me I think you have Fibromyalgia. I couldnt believe the R.A. tests( 2 of them) came back negative.I had had one test 21 yrs ago and was positve.He said well must be in remission now then.I was stunned to say the least.Geesh had managed the R.A. real well I had thought all these years.
So now heres what I do . I do lots of stretching.I take aleve 2 tabs 3 times a day.I also take 2 tabs ultracet 3 times a day.once in a while I have to take more . He also put me on Effexor xr75 mg a day.I sometimes take 150 mg .I take it at night it does help me sleep better. I also take miraplex for restless legs. I also am starting to take a product called Alteril.Its all natural products for sleeping at night.you can find on internet It has Melatonin,L-Tryptophan(the stuff in Turkey that makes you sleepy after eating)skullcap .Chamomile extract and a few others. I am feeling better . I know stress does not help .Just getting a better sleep.I only take one instead of 2. I still have bad days 2-3 a week but am better. I know I need anothe epideral in lower back .I have tendinitis in elbow also . I need injection for it also.The effexor has helped the pain to go away.I noticed a difference in 2 weeks. Go figure.I dont know if pain causes depression or depression causes pain.I dont like either.Hope this might help someone.It just takes time to find someone to believe you arent crazy .then find what works or doesnt work for you .

Hi Diani,

First let me say that I am so sorry to hear that you have fibromyalgia. Unfortunately, there are no success stories with this disease honey. It is a chronic disease which means it is ongoing...it never stops but I find and many people do that I have good days and bad days. Good weeks and Bad weeks. AND Jesus always has been by my side and always eases the worst of the worst.

I was diagnosed by a well respected Rheumatologist back when Fibromyalgia was NOT well known and MOST Doctors did not recognize it as a disease. That was way back in the 80's. Many doctor's since then have confirmed it. I also have avascular necrosis also known as aseptic necrosis which basically means I have no blood supply going to the bone joints causing them to break down and crumble. (which was caused by a medication I still have to take).

The only medication that has ever worked for me for this disease has been The Duragesic patch (morphine) and hydrocodone, oxycontin and a couple others that I took a long time ago but were along the same lines as these are...they were all narcotics. With the narcotics, I still feel the pain and that is what is strange. I feel it but I don't care about it. It's there and I know it's there but I can tolerate it. It's very strange to explain. My doctor's continually tell me that I have an extremely high pain tolerance and they think that I am living in extremely intense pain when they look at my xrays. They cannot believe that I am still walking. Both my ankles are completely crushed as is my left knee and they say according to my xrays I should be on a lot more pain meds. So I am very fortunate that I can tolerate this disease so well. But I have to say that it is extremely painful especially when you battle it with the fibro. With the FIBRO, my hubby can't even touch my skin with one finger, it feels like he's poking me with a knife...my hair even hurts on a bad day! And when the narcotics start to wear off the pain starts to get ahead of itself it can be painful very quickly so I have to be right on top of the pain and take my oral meds right on time or it will take forever to calm the pain down. I also use Lidocaine patches wherever I want...I usually use it on muscle groups. Anyhow, the narcotics are the only drugs that have ever helped my pain. And I wear pressurized tights...whatever you call them from my toes to my waist almost every day and elastic bandages around my knees. I get measured for them every 6 months and two pair costs $3000. Thank God our Insurance covers them. It controls so much pain I can't even begin to tell you...I have lymphedema and these things take the swelling down by keeping everything circulating...thus helping the fibromyalgia, too. On the few occasions that I have not worn them...OH how I have suffered. I have a fantastic pain management Doctor who I see on a regular basis. I use to go to a massage therapist, also, but my insurance stopped paying for sessions. That was amazing. It hurt so much when she touched me BUT an hour later I was at least 50-75% pain free. But it only lasted a day. BUT I know that you know what it means when I say...A DAY PAIN FREE IS A DAY PAIN FREE !

So I recommend massage and I also recommend Acupuncture. That has kept me from increasing the narcotics for the last 3 years. I started out going M through F...then M and W and F...then T and TH. BUT in the winter and during flare-ups I go everyday if I need to or whatever brings me relief.

I am so sick of the traveling everyday this winter almost an hour one way ...but soon hot weather will be here and I know I'll feel better for a while. I cannot tell you again how much it (acupuncture) helps me. When I walk out I carry my crutches. I feel light as a feather...no pain...but it manages to creep back in slowly. Sometimes I'll have 3-4 good days right in a row just like in the summer if it's really HOT outside and very DRY. When we go to Myrtle Beach, I feel like a new woman. I'd love to move SOUTH just to be almost pain free more of the time.

This winter I have almost been everyday and either I have to find someone to take me or if I am in too much pain I have to stay home and suffer because many times I cannot drive. I have a friend bringing me tomorrow and I am also seeing my pain management Doc...my right leg is completely out of commission...my ankle and knee are both locked up and when I try to move it my replaced hip feels like it's going to pop out of it's socket again. I spent last Sunday in the ER and the only diagnosis I got was... "see your surgeon...And by the way how old are you?...well then...I don't recommend a knee or ankle replacement you're too young (I already have had a total hip replacement on that side and 2 revisions on it...I have had a total hip on the left side also and have been recommended to have both ankles fused or replaced but the last time I saw my surgeon he said neither could be done as there wasn't any good bone left to fuse or attach any replacement to...I need another opinion. I have already had my ankles debrided twice). So I said to him, well, what should I do...he said I don't know and walked out of my little room." LOL nice guy huh? What a big help he was. :-) I sat there all day for that. He didn't give me any more pain meds or anything so I called my pain med Dr...she's got to help me with this knee pain.

The pain I get with the fibro can be deep muscular aching, throbbing, shooting, burning, stabbing, numbness and tingling...my front right leg from my groin to my knee is totally numb from it), muscle twitching, occasional irritable bladder, dry eyes and mouth (But I also have Reynauds Syndrome which cause dry membranes all over), dizziness and poor balance (I now walk with 2 wrist crutches because I keep falling and causing tears in my skin and they are difficult to heal), I am extremely sensitive to the sun and bright lights (especially car lights at night) and prescription meds.

This winter, I always have pain and stiffness in the morning. I am tired ALL the time. I feel like I have "brain fog". My head is always in the ozone. Some days I can't drag myself out of bed. I just found out...actually I just did the test at the local hospital Tuesday evening I had to stay overnight for the apnea sleep study...and I have apnea and something else...alpha nomaly something...I'll know more when I go to be fitted for the machine I will wear at night...but both go hand in hand with fibromyalgia. I have known about the apnea since a few years after my kidney transplant which was in 1987...but I had bigger fish to fry back then and it was put on the back burner for all these years.

I also have Periodic Limb Movement...well thats the twitching , I guess...LOL, Restless Leg Syndrome (RLS), I either have constipation or I have diarrhea...my gut is never happy. Two years ago this April I was hospitalized because I had diarrhea for 2 1/2 months and was going 22 times a day and had lost over 60 pounds. I went to the ER 3 times before they admitted me and the only reason they admitted me was because my hubby called my primary care giver. It was the 3rd time I had went in ...in 5 days and not only did I still have the diarrhea BUT that morning I had almost hit another car because one of the disks in my back fractured as I was driving down the road and I lost control of my car for about 5 seconds. AND I had two HUGE HUMONGOUS RED CIRCLEs on my left leg that turned out to be 2 hives...an allergy to a medication I was on. SO I had 3 complaints now and they still did NOT believe me about the fracture and the diarrhea ! So my hubby called our DOC and I was immediately admitted and I did have a fracture (I knew I did because I have had one before), and I had lost over 60 pounds and was severely dehydrated to the point that my Doc told my hubby had he not brought me in my heart would not have lasted another 24 hours, and no one could believe how many times I had the :-)Hershey squirts. It took them 2 weeks to get me stable.

These things make my fibro worse: changes in weather, cold or drafty environments, wet rainy weather, snow, infections (colds and the flu and sinus), allergies (I have many allergies to meds and foods...lactose intolerant and gluten allergy...I have to be so careful), hormonal fluctuations can bring on a flare-up for me and I have been in early peri-menopause and I thought that was bad BUT now I am in premature menopause and my fibro has gotten worse), stress, depression, anxiety and over-exertion all seem to make my fibro symptoms flare-up.

BUT watching what I eat does seem to help. Staying away from soda and sweets and going easy on carbohydrates seems to help.

I have many other health problems besides the fibro...GERD, Migraine and Chronic headache, SAD and Temporomandibular Joint Dysfunction Syndrome or TMJ, IGA defiency (which I have to go to the cancer once a month for an infusion for the last 20+ years.

And I just want to tell you that many people will look at you and they may say things like...well you don't look ill...you don't look tired. Don't let them get you down or break you. I almost let my in-laws do that. I had a kidney transplant in 1987 and they were still saying horrible things about me...like, well, I've never seen her sick. There's nothing wrong with her. She the picture of health. They didn't think I was ill because I chose not to let them see me ill. No one but my husband new how sick I really was. I always wore makeup and dressed nicely. I did dialysis...peritoneal and hemo for 2 years and I don't think 5 people knew about it. That's what I wanted people to know. I do not like pity parties. Even to this day, people are shocked when they see me on a crutch or two. Sometimes I explain and sometimes I don't. Yet his family still thinks I'm faking all this...how in the world can you fake fibro?...a kidney transplant?...a bladder attack and removal? and a liver disease and celiac sprue disease?...and the lsit goes on...how can anyone fake this??? My husband and I will celebrate 30 years this July and it kills them that he has stayed with me and they can't keep a husband and they are healthy. Oh well...I think I remember...In sickness and in health...till death do us part...

There are a lot of diseases that can be present when you have fibromyalgia and fibromyalgia can have many symptoms.

I hope this has helped you. I wish you only the very best and I pray that every day is as pain free as it can be and walk in the light with your head held high.

I pray for you many
Peaceful & pain free days ,

Porttia

Hi Velvet...

I hope you have a wonderful day today because you deserve it ! I read your story and found that your's and mine were much alike. I have tried many of the meds that you are now on and I am on some of the meds that you are currently on...the hydrocodone, the duragesic patch which is morphine...and I also rotate with oxycontin and a couple others. There were a couple that I would like to try to...like the Devil's Claw. I have seen this many times and always wondered what it was for. I will address it with my Doctors. I, too, take B-12 injections. Mine are not often though...just every two weeks but I have been getting them now for around 9 or 10 years. It was supposed to be a short term thing. I understand about the sun and Vit D thing. I am allergic to the sun. I get red raised hives when my skin is exposed even breifly. I am supposed to wear special garments inside and outside BUT they are so expensive and UGLY ! A decent looking shirt runs around $125.00. But getting back to getting sun...I also have SAD. For the last 5 years or so, I have been using these lightbulbs that mimic sunlight and I get them at the co-op in the local city. And I cannot tell you exactly what they are called because I'm having a "brain fart". I need to pick some up this week...the Dr wanted me to buy this lamp that was &300.oo but I found that these light bulbs are the same thing and I can put them in my own lamp and they cost me less than $3.00 apiece...such a deal, huh?! LOL Last time I bought 4 of them...I usually buy all of that they have on the shelf but there was this little old man that came over to me and he was soooooo cute and said...Oh, so you're the one who took them all. Could I please buy one from you? He was going to double my money. I said NO WAY and asked him how many he wanted. He said he would like to buy as many as I thought I could spare as he lived far away like I do and hated driving into the city. SO of course I shared and gave him 4 and I kept 4...and I refused his money.

My pain management Doc is female also and I tell her that if she leaves I'm going with her ! My family care Doctor recommended her. OH, and I almost forgot, I also get Lidocaine injections and cortisone injections every 4 to 6 weeks OR at my request but NOT sooner than every 4 weeks. Those injections are amazing. I have had a couple nerve blocks also when I have went in with a migraine and had to drive myself home...that was quite the experience...my head felt like a cement block for 12 hours. The first one I had scared the "dickens" out of me ! LOL I stayed in her office for 2 hours and then pulled my car on the side of the road and had my hubby come and get me. I just could not hold my head up...it felt like it weighed a ton but the pain was gone.

Praying for Peace and a Pain Free DAY...one day at a time...just for YOU Velvet,

Porttia

Yep, Melissa...nothing better than warm, dry heat or Hot water from a tub or better yet a HOT TUB !

I am trying to talk my hubby into buying me one of those bathtubs that you walk into...that is a shower, a tub and a hot tub...all in one. A medical store sells one. If we buy it, he may never see me again ;-) Maybe if I tell him that...he would buy it sooner ! :-)

Peace,

Porttia