Fibromyalgia: Anyone have it? Familiar with it?

Hi Lady J,

Yes, sadly to say I am familiar with it. Are you asking for yourself or someone else?

Newt

Thank you, Newt.

I appreciate you replying. And yes, I am inquiring for myself. What is your experience with Fibromyalgia?

Lady J

I have a email address where you can hook up with folks who may be able to help you. It's [email protected]. Now they mainly deal with Chronic fatigue Syndrome but they also have access to sister groups since the two disorders are very similar. My advice is to listen very cautiously since many of the folks get a littel obsessed because they have been ill so long and some are willing to take chances with treatments I find a little disconcerting. This group is in Maryland or Virginia but they can probably point you to groups in your area. Good luck. If it helps at all, I dealt with cfs for about 10-13 years but seem to have finally beat it. I wish you all the best.

Lady J,

So very sorry to hear this. I have both Chronic Fatigue Syndrome (CFS) and Fibro and have had it for 14 years. I too seem to have beaten the CFS, but it took 9 years. I had some wonderful help in this.

I do have alot to share, but I don't want to overwhelm you. As Glitterbag mentioned, there are alot of folks out there with agendas or something to sell. So that I am better able to share information with you without going down a path that isn't appropriate for your situation, I'd like to ask if your diagnosis is new or something you have suffered with for a while and known about.

One bit of information that I will share is that it appears the sicker one is, the less traditional medical approaches seem to work. I had four doctors at Johns Hopkins tell me that I had the worst case they had ever seen. At that time I was bedridden and in a wheelchair. When I was striken I was in my early 40's, working two jobs, attending college full time, an avid equestrian, an avid outdoors person, an avid gardener and had always been physically active, having been a dancer in my earlier years. So, not a sedentary person by any stretch.

Oh, one more thing that I have noticed is that many folks who get these two syndromes are active people and are, or have been, in a stressful situation just previous to the onset, hence you may hear that it seems to be trauma induced. I developed my symptoms after an assault.

When I was diagnosed there were no support groups near me, so Johns Hopkins referred me to The Arthritis Foundation and they trained me to run a support group where I live. I ran that group for 1 1/2 years. I gave it up for two reasons. The first, and foremost, was because I couldn't keep up with all the personal phone calls I was getting at home and was totally overwhelmed. I bought a headset telephone, but I could get as many as 50 phone calls a day! Remember, that was 14 years ago and I didn't even own a computer at that time, nor did most folks. The other reason was because The Arthritis Foundation, who sponsored the group, did not allow us to talk about alternative treatments. They were in to drugs and physical therapy. The type of physical therapy used at that time was just too intense for most people and was actually exacerbating their problems. For most folks that path wasn't working.

Do let me know exactly what you are looking for. I will share with you that I have tried just about everything, short of surgery, and am now walking without assistance, have travelled to South America and hiked Machu Piccu - a VERY loooong hike for me with the assistance of my wonderful son! We travelled to many wonderful places and I truly lived many of my lifelong dreams. I have found a path that has helped, but each of us is different.

I will be happy to share with you as much as you want to hear. As one wise doctor said to me, "It's your body and no one knows it better than you do. If something is working to make you better, keep at it no matter what anyone else says."

Btw, after being bedridden for the better part of the first 9 years, my fight for Social Security Disability took 10 years, but I won! I am definately better, not cured, but the world is much brighter and easier to navigate. I do have bad days and sometimes bad weeks, but life is definately easier.

Newt

Thank you both for replying, glitterbag and Newt. Your information is wonderful and very valuable to me. I have actually had fibro for about 25 years give or take (before they ever even called it that!) and for many, many years, I just suspected it was residual pain and tiredness, etc, etc, etc from a very bad car accident. Part of me of course, thought I was just a bit hypochondriacal and I never put all of the symptoms together until about three years ago when my sister, who was my best friend also, had her life taken at the hands of another. Then everything hit me all at once like a freight train. Out of the supposed 63 known symptoms at the time, I displayed about 49 of them very acutely.
I was the one who actually told my doctor what I had and he said he had suspected so for awhile himself, but it was never really so overwhelming for me that I couldn't deal with it on my own.

Like you, Newt, I have always been incredibly active... fast paced, high pressure job, raising two children on my own, hiking cycling, coaching my kids sports, PTA, traveling for work. You name it. I was pissed as hell to be honest with you. I have always been one also to take charge of my own health and I have a great partnership with my doctor who trusts my judgement completely (as I do his). We've been lucky to have a Doctor/Patient relationship for 24 years, so he literally knows me inside and out. I am also very blessed to have a psychologist/chronic pain therapist who also has fibro. She's been nothing less than an angel by my side.

Almost three years into my rehabilitation though and I am still working on getting things fine tuned. I still never reach either level 3 or 4 of my sleep cycle in spite of a cpap, meditation and a few changes in my sleepytime meds The pain I can deal with as long as I stay on top of it. I refuse to take any medication that is addictive, narcotic or habit forming. My few attempts at a more herbal approach actually made me sicker than can be. I'm 5'8" tall and have to work very hard at keeping my weight above 125. I have a very hard time with swallowing and most of the time food holds very little appeal to me. The hardest part right now about that is I went on a state disability leave from work about 5 weeks ago to really devote more time working with the Sleep Center and was going to have an upper GI just to see if there was anything else going on. Well, lo and behold, lovely employer that I HAD, sent me a letter about 10 days ago, terminating my employment, thus losing my medical benefits that I had with them. No upper GI now. I could adopt their COBRA plan of continuing insurance, but the cost is almost 700 dollars a month just for that.. Currently I am seeing if I can qualify for a state medical insurance plan, but at the moment I have nothing. Argh! Luckily, my doctor does give me samples of the meds that I do take and I have always been my therapists "pro bono" case...I have no idea why, I think she just likes me. and my doctor said he is willing to see me free of charge until I do get some other insurance.

Newt, I can't believe it took soooo long to get your Social Security Disability benefits, but I am so glad you persevered! I know there are more and more requests for the Federal Disability coming before Social Security all the time and with Fibro finally being recognized as a REAL and valid condition and with the backing of the Arthritis Foundation and tons and tons of doctor testimonials, wouldn't you think these beauracratic buttheads would eventually and finally put it on their sacred list as a true disability? That frustrates me so much!

You know....and I almost have to apologize to you both. In hindsight, I guess maybe I didn't really have any specific or particular questions after all. I'm not big on support groups and you both gave me even more reason to not seek them out per se (the fanaticals et al). I really like this community forum and I think maybe I was just looking for someone to share a bit with. Someone who could understand outside of a specific FS or CFS gathering.

I can't thank you enough for listening and for sharing your stories as well. Try to keep me updated on yourselves and I'll do the same if you don't mind. BTW....I am getting back into the physical exercise slowly but surely. Swimming this summer, walking every day and I went for my first bicycle ride in years about a week ago! Plus I do a light weight training program and lots and lots of relaxation and meditation. WooHoo!

Thank you, thank you both again. We are not alone and we shall overcome! Much love and blessing to you both.....

Jan

Lady J,

First I would like to say that I am truly sorry for the loss of your sister. I too have lost a sister and can relate to what you have gone through. I have alot to tell you that I think you might be interested in. Unfortunately I MUST go to bed. I volunteer two nights a week (midnight to 8 am) with Alley Animals. We feed and trap stray animals in the alleys of Baltimore and I just got home a little while ago. It may take me a day or two to write again as I have to go out tonight too, but if you're interested in what I did to be able to function so much better, I will gladly share that info with you. I have never shared this with anyone on an open forum before, so you're in 'good' company. ;-)

Stay well,
Newt

Newt,

I would love to hear from you again...but ONLY when you are rested!! I'm in no hurry and going nowhere and would definitely appreciate your sharing. Thank you!! You keep well also and I'll speak with you soon!

J

I don't mean to change the subject, but Newt, I was born in Baltimore. I have lived in AA County since about 4 and currently live right outside of Annapolis. Small world

Hi Jan and Glitterbug!

So sorry I have been away for so long, but much has happened since I last wrote you, most of it good, just exhausting. I have learned to slow down when needed and that is what I did. I also had some weird computer problem that wouldn't allow me to connect to the internet. After a couple of hours on the phone with tech support and conference calling with them and my son (a computer whiz), we never seemed to correct it. A couple of days ago my son got on the phone with me to help me back up my bookmarks and address book and suddenly the computer was connecting to the internet. Maybe it needed a rest too! ;-)

Anyway, I do hope that you both had a wonderful Turkey Day! My hubby went to visit his mother in southern Virginia and I stayed home and had a wonderful and quiet day. Very enjoyable this year for me.

Glitterbug, it's nice to know that you are so close by and are doing so much better. I am in Columbia.

I'd like to address some of the things I have found that have helped me, some that didn't, and explain how I came to seek out these solutions, so this will be a long post. I suppose I need to go to the beginning of when I was diagnosed. I did the traditional route of western medicine (traditional MD's) and they couldn't seem to find out what was going on. One thought I had leukemia because of such a high white blood count. I even went to an infectious disease specialist and a heart specialist. I languished for about 9 years, in and out of bed and a wheelchair, using a cane and a walker. I got weaker and weaker. I tried the traditional meds from tricyclic drugs to sleeping pills. I tried chiropractic which helped sometimes but was often too 'rough' for me. Accupuncture helped with the pain but the results were short lived. Neuromuscular massage was helpful, but would put me flat in bed for 2 days afterwards with about another 3 days of better functioning and then back to square one! At it's worst, my sleep disorder would only let me sleep for 15 minutes at a time. Who wouldn't hurt and be exhausted? I gained weight like a small whale (went from a size 8 to a 16) and became very depressed. One doctor even asked me if I was depressed. I said, "If you felt like I feel, you'd be depressed too!" He was trying to say that my depression was causing my sypmtoms and it was just the opposite.

I did mention that I had a long hard fight of 10 years to get my Social Security benefits. One of the problems was that I was in denial that I would get well and didn't need it, so I waited too long to apply. If anyone is reading this and has gotten to the point of not being able to work, apply now! You can always cancel it if your health changes for the better. The first rejection was becasue they said I was no longer eligible. I did give up a couple of years of benefits in the end, but I did get my benefits. Another problem is that my hubby had just become disabled from an industrial accident during this time and I was a full time college student when this all happened to me. I was actually on my way to class when I was assaulted. Needless to say that finances were stretched beyond belief and I found that I just couldn't afford to seek out any medical care after a while. I have to interject here that I have been truly blessed with wonderful kids, both biological and foster. They have been most helpful over the years and were teenagers when this first happened to me. That was 14 years ago and they are all grown now, some with families of their own. Well, my son, who had experienced several years of illness himself, was now in a position to help financially. He got a job with a firm that sent him to South America and began making a very substantial living. Since I have always sought out non-traditional forms of medical care that had been helpful to my kids, he called one day to say that everything was paid for and I should make an appointment with the homeopathic that had helped him and my other kids.

That was the start of my recovery. This homeopathic is also a nutritionist and teacher of homeopathy and I've known her for about 26 years. At the time I went to see her, I was so weak that I didn't have the strength to finish brushing my teeth without resting, couldn't shower without sitting down, couldn't lift a gallon of milk, could only lift 2 dinner plates at a time, etc. That first day I saw her she said, "I can't cure you, but I can improve the quality of your life." She gave me some homeopathic pills to put under my tongue that first day and told me to take them 3 times a day. That night was the first night in 9 years that I slept for more than 1 1/2 hours without waking. I actually slept for 6 hours straight! When I awoke I sat up in bed and felt normal for the first time in 9 years! I even RAN (albeit very clumsy) into the kitchen for the first time in 9 years and began dancing around singing, "I feel normal, I feel normal!!!" It was amazing!! In the last 5 years I have only had 3 attacks of chronic fatigue that only lasted a few days. I began a regimen of vitamins and homeopathics (all paid for by my wonderful son!) that helped to stop most of my symptoms. I still was weak from spending so many years in bed and spent many, many, many days sleeping. I think my body wanted to catch up with all the sleep it had missed. I still suffered from fibro pain and some sleepnessness and my body just couldn't seem to get strong enough to walk very far no matter how hard I tried.

Then one day my son said that since I was only using a cane, it was time for me to visit him in South America. I was scared out of my mind to travel so far, but I trusted him and returned with him last August after he came for a visit. I spent 4 months in Peru and travelled to Ecuador a couple of times as well. He got me started with a fantastic physical therapist in Lima, who I saw 3 times a week, and who helped me to throw away my cane, climb Machu Piccu and hike in the Amazon Jungle! She started out so slowly and gently that my first thoughts were that it was silly. In the end, she said that I needed at least another year of physical therapy that was gentle. After a few weeks she started me on a treadmill and I could only walk for 1 1/2 minutes. When I left Peru I could walk on it for 30 minutes! I spent most of my Social Security back pay on my travel to Peru and the medical care I received there, but it was well worth it! I could never have afforded it here in the US. I have since purchased a treadmill and the physical therapist corresponds with me. She has instructed me to start at 5 minutes a day and slowly work my way back to 30 minutes.

There have been some other discoveries about my health along the way, some of which aren't pleasant, but I now have more strength to fight them. What do I think about fibro and chronic fatique? Well, it seems to me that adrenal exhaustion has alot to do with it. It depletes the body of nutrients and supresses the immune system. What causes it? I don't know, but I suspect that the chemicals we put in and on our food, use to control pests and clean our homes contribute here. I also feel that the type of processed food we eat doesn't help, but causes more harm. High powered people who are type A personalities seem more prone, so stress (which also affects the adrenal system) seems to also play a role. Will I ever completely recover? I doubt it, but I'll never give up trying. I have more hope and more strength now and I try and encourage others to look beyond the traditional drugs that are offered.

I hope I haven't shared too much here to make anyone uncomfortable or that you feel that I am preaching. There have been many who have helped me along the way and I am truly endeared to them, but most of all my son and his sacrifice to go to South America so he could help me (I just recently learned his motive for going there). He has done much more then just pay medical bills, but I don't need to stand on a soap box here either as, in my heart, I know all he has done to help me and my hubby.

My hope for anyone suffering with this is that they can get the help they need. If something you are doing is working, keep at it. If it isn't, look into other options, but don't ever give up.

Hugs to all,
Newt