Re: Fibromyalgia Hurts posts

There has been a lot of false talk about fyrbomyalgia from those skeptics who know virtually nothing about it, even though they think they do. The condition can be completely debilitating. My cousin suffes from the condition and has been on total disability for about fifteen years. He is an RN, and fortunately, if you can be fortunate in this matter, he lives in California, where the medical establishment and the state government do consider it a disabling disease.
Webduck *, keep up the good work.

Thanks very much Peter. Personally, I think it is something genetic, since I have had the symptoms all my life. When I was younger I think I just was able to cope with it better. We do have good doctors here in WA state too, thankfully.

Everyone: I am sorry I am not a better list owner, and if something gets posted to this list that is considered objectionable and I don't notice it, I hope someone will call my attention to it so it can be removed.

Webduck, I've had it for several years and it does kick your ass (sorry). It is an auto-immune disorder, which is your body attacking itself. Plus there are several side conditions that can be connected to it that also be debilitating. That bad thing is you can look healthy, but be living in hell. That healthy flush on ones cheeks can be lupus. Thanks goodness I don't have lupus! I even went to Mayo in Scottsdale Az and they could only offer rules to live by; one which is avoid stress(that made me laugh!). But staying on a schedule as much as possible does help. Sure wish I could do that. Meds for the sleep disorder, whic are habit forming so I wont take them. I think Visualization, Reiki or Quantum-touch therapy may offer the key. These healing methods helps you be more mentality involved with the process.
In some places they are treating it with oxygen therapy.
http://www.fmscommunity.org/oxygen.htm
http://www.fibromyalgia-symptoms.org/fibromyalgia_muscle_stim.html

But is is a real disease, with real symptons, and it is extremely painful.

Hi Webduck;
I think I mentioned before that my son was diagnosed with fibromyalgia a few years ago, but symptoms started showing up years ago. We do believe is genetic as his half sister (on his father's side) also was diagnosed with it. I can tell you from living with him that it is a very debilitating disease and though he can cope some days, there are others where he is completely wiped out.

As someone who has had it for approx. 10 years now I would certainly agree with the fact that it is a most debilitating and painful disease. There are days when I can cope with it, but also days when I can't. Days when it's a struggle, and days when I'm not too bad and can tolerate the pain and get around. Seldom do I ever have days that I don't have pain or struggle with it. Along with it often goes extreme fatigue, and that is something I also struggle with. My fibromyalgia has never got better since I was diagnosed with it. Instead it has continued to get worse over the years, and along with it I also have severe osteo arthritis, which just adds to my pain. Too often I find people just don't understand, or they look at me and think I am ok when I'm not. One of the worst things with it too, is that it can affect almost any part of the body, from my head to my toes, as well as leave me totally exhausted.

Thank you for providing a place for us to talk about this, Webduck. I was diagnosed with Fibromyalgia in August of 05 and this was after complaining of pain and knowing there was something "wrong" with me for 10+ years. I am exactly like Dawn because my Fibro has never gotten better and it's only been worse. I am also in the process of trying to nail down a diagnosis of Ankylosing Spondylitis (having problems with insurance covering a 2nd MRI because my doctor requested the wrong one in the 1st place!) and I have a heart condition on top of everything that started with my most recent pregnancy. I am now taking a controlled substance 3 times a day (which was a very hard decision to make) and I am also on anti-inflammatories, anti-anxiety meds, muscle relaxers and migraine prevention. Those seem to help a tiny bit, but just enough to where I can kind of cope. This disease is extremely difficult to live with and even harder when people don't understand it.

I am sorry for all of you that have this disease. It sounds terrible. I have a few friends that have it, they are online friends like you, and have t old me how they feel too. My heart goes out to all of you that suffer from it. God Bless You

Webduck I will come back to make a comment, right now I must have my
lunch and try to keep on schedule with my meds.

My fibro can be influenced by so many things: the weather, etc. Just yesterday, I spent all day planting flowers. I wanted to just go lay down and nap, but I had to get them planted. For me, I have to do things in small steps, and then rest. This went on all day, and I felt so good about accomplishing it all. Some things didn't get all done, like picking up my empty plant containers, but they were patient and waited for me till today. :) I had a Slimfast for a late afternoon snack and then about 4:30 my husband came home from work and I was beginning to feel the need for some fuel so I made a quick sandwich. He yelled at me for eating late and we had a shouting match in which I told him that I am 56 years old and I don't need for him to tell me when I can eat! Sometimes, I just need to eat something NOW in order to have the energy to do the things I still need to do. He proceeded to go lay down and sleep for 3 hours. I had put some turkey thighs in the oven and when he got up, supper was ready. On top of dealing with fibromyalgia and the pain, I am also married to a non-compassionate self-centered egotist. Sometimes, life just sucks. I am not a quitter though, and my self-esteem is intact. He and I just live in two different worlds. Living with someone who doesn't understand what it is like to have fibromyalgia is the hardest part.

I think your group on fyrbomyalgia is great. I didn't know much at all about it before a month or so ago and now I'm reading about it all over gather. Keep up the good work and the articles as well.....

Im not a part of this group but did a drive by ten for ya *poof*

Can you believe your article (http://www.gather.com/viewArticle.jsp?articleId=281474976975455) is STILL not showing up for me? How weird is that???? I'm tellin' ya... it's a weird Gather glitch. It just has to be. I'm sorry.

I was diagnosed with fibromyalgia in August 2006. I started having pronounced symptoms in August 2005 and I was tested, poked and prodded for more than six months. I actually feel like I may have symptoms much longer. I also have migraine headaches (since I was a child) and irritable bowel syndrome (diagnosed several years ago). I live in California and I was surprised by Peter's revelation about doctors and the government in California. I am still working most of the time, struggling, and trying to find ways to cope with this condition. I tried a variety of meds for more than 6 months and the results were not worth the immediate side effects or possible longterm side effects. I have tried acunpuncture with herbs, and I was allergic to the herbs. I just started Tai Chi and it is a real struggle. I will start water aerobics in July. I just accidentally found this group on Gather a few minutes ago. Today has been a good day emotionally, being able to connect with people who understand this illness (on Gather and in Tai Chi this morning). Physically, I feel like I am heading into a flare up.

It is a debilitating illness, how do you cope with an invisible disability, working full-time, and tolerating people who just don't even try to understand? Several people on Gather have indicated that their condition has worsened. I have felt that way lately. I thought I was doing something wrong because I have read and been told by doctors that the condition does not get any worse???

I just now found this group and joined (moments ago). This is the first article I've read and I just wanted to take the time to thank you for being willing to monitor the group; yet allowing some leniency. I, too, have FMS and have been on SS disability because of it for more than a decade.

Nice finding you all.

Well, I'm a bit late coming in but I just found this. You may have read something I wrote before about FM or chronic pain.

I don't understand in this day and age how people are still needlessly suffering from pain. There are so many options now with pain meds, anti-depressants and the newest drugs like Provigil (helps great with the fatigue and also pain for me) and Lyrica. My Doc just gave me some Lyrica samples to try. Dont' know if I will yet or not because I'm in a really good place right now and don't want to screw it up.

I'm not blaming the patients, mind you. I'm blaming the doctors who are too afraid of the DEA or just don't give a dam*. Yes, FM is a horrible disease and no one understands it unless they have it. I've been there plenty of times. I just don't talk about it much anymore. I also have 2 other autoimmune diseases. Most people seem to have more than one.

There are compassionate doctors out there who are willing to help ease the pain. I have one. I also have a wonderful husband who tells me I should go and rest when he sees I am struggling on a bad day. I am fortunate enough to not have to go to work if I'm hurting bad. I don't let myself feel guilty for taking it easy when I need to. I do what I have to do to get me through.

Bless you all - and keep on keeping on. There is hope.

I'm a single mom of a 12-year-old son who also seems to have some symptoms of fibromyalgia. I remember, even as a small child, being in some sort of physical discomfort a majority of the time, from mild muscle aches to severe, fever-like body aches. Everything hurt like I had a 104 degree fever and the flu or something, but I had no fever and no flu. In fact, I woke up today feeling that way. That hasn't happened in a really long time, thank goodness.

I am very interested in the connections between mental illness, physical injury, viruses and fibromyalgia.

I was diagnosed in 1994 after my allergist did a huge number of blood tests along with my allergy tests and physical exam. I'd had Epstien-Bahr virus at some point in my life close to those tests. I had a large number of antibodies for it. We think I had mono instead of the flu six months before that. After that bought with the flu, I was costantly tired and could never seem to bounce back, even months later. My allergist diagnosed fibromyalgia instead of CFS because I was only extremely tired when I was in pain, which was most of the time. My family physician concurred with his diagnosis and started treating the pain. With less pain I was less tired. My family doctor sent me to a psychiatrist for further treatment with antidepressants because of my long history of depression. That made things even better.

Today, I have few really bad days and I've learned how to pace myself so physical work like house cleaning and mowing the yard don't put me in bed anymore. By pacing myself, the added activity in reasonable doses seems to make me feel better. But as you all know, I don't dare over do it.

I have moderately severe depression and anxiety. Since my depression and anxiety have been well-managed I find I have fewer fibromyalgia symptoms and fewer bad days with pain. But as this morning proved, treating the mental illness effectively isn't the whole story.

I also experienced a great deal of improvement when I got a Select Comfort Sleep Number bed about 5 years ago. By being able to adjust the softness and firmness to meet my daily needs I find I suffer less.

I've found, too, that for me, naproxen sodium is the best non-narcotic treatment I've tried. If I take one 220 mg tablet each night, my pain levels tend to stay relatively good much of the time. I'm one of those people who saves narcotic pain pills from major and minor surgeries for really bad days. That's the only time I take them and they don't make me sleepy when I'm in enough pain to warrant taking one. I haven't tried Provigil or Lyrica because I'm doing really well without them. When I have a lot of symptoms, I find changing up some of my psych meds does a better job for me and that my fatigue tends to be caused more by breakthrough depression symptoms. But that's just me, and each person suffering from this knows all too well that there are a cluster of symptoms, but we each suffer with them in different ways and to different severities.

I have a pretty high pain tolerance as well, so pain symptoms don't bother me as much as they do many people. I know this because I gave birth without an epidural, I wasn't in labor very long, and hard labor hit just as I was ready to deliver so I wasn't facing long hours of intense pain before my son was born. I'm very fortunate to come from a long line of women who experience easy, short labors and deliveries. 95% of women end up having an epidural. Only 5% manage to deliver without anything for pain. I suffered a lot more pain from the extreme fatigue of being a new mother than I ever came close to during labor and delivery. Fatigue itself causes me to have more pain.

My son has depression, anxiety, and a mood disorder (probably bipolar disorder) but he's too young to get a definitive diagnosis. He is being treated as if he has bipolar II disorder and it's working well. He also suffers from a lot of aches and pains and migraines. So far, we can't tell if his physical pain is from mental illness or if he really has fibromyalgia. Depression itself causes physical pain.

I hope to read many posts here and see what others are doing to manage fibro, and how much others feel it may be related to viruses, injuries, and mental illness, or if there is another factor involved.

Prayers to everyone. I have more hope now than I've ever had about this illness. If what you're doing isn't working, change it! There is relief.

I forgot to tell you what meds I'm taking. If my cocktail helps even one of you, it's worth a second post.

I see a psychiatrist to treat my depression, and I recommend that those of you who have worsening depression symptoms seek treatment from a psychiatrist. Your depression may not be solely due to fibromyalgia. There is no need to suffer from depression when there are boat-loads of new medicines that can successfully treat it. You need a psychiatrist because he/she knows how to put the meds together to resolve all the parts of the depression you suffer. Depression isn't just a single symptom. It involves feeling down (even to the point of suicide), fatigue, physical pain, lack of motivation, and lack of energy to name the major ones.

I'll never forget what my allergist told me about unresolved symptoms. He said to not blame everything on the fibromyalgia just because the symptom is related to it. He strongly urged me to seek treatment for the overall illness and each of the symptoms separately. When I started doing that I got better and have stayed better most of the time.

I take Wellbutrin SR 150 mg in the morning and 150 mg again either in the afternoon or evening. I take Cymbalta 60 mg each morning and 81 mg of aspirin. I had blood clots after major surgery in 2001 and my doctor suggested low-dose aspirin after I was taken off Coumadin.

My evening meds are: mirtazipine 15 mg, diazepam 5 mg, naproxen sodium 220 mg, Singulair 10 mg, loratidine 10 mg, famotidine 10 mg, and a multivitamin with extra iron. I tend to be anemic.

I have asthma so I also take two puffs twice a day of Pulmicort Turbuhaler. To help my nasal allergies I take two puffs twice a day of Rhinocort Aqua, Flonase, or Nasonex and Astelin. Over the last 10 years I replaced all the carpet in my house with hard flooring, so my house traps far fewer allergens and it's really helped me feel better.

I use samples from my allergist because I don't have insurance and I can't afford the allergy meds. Those aren't so highly regulated so they keep a lot of samples and I can get them for free. The psych meds are highly regulated so I have to pay for them, but they're not too expensive since all but one are generic.

The Cymbalta treats general depression and anxiety, Wellbutrin gives me a real kick of energy. Without it I stay in bed. Mirtazipine adds motivation to the energy from the Wellbutrin, and it really helps me sleep well. I take diazepam at night to help me relax my jaws. When I started on Wellbutrin I started seriously clentching my teeth. It's a known side-effect. I also wear a dental splint to protect my teeth when I grind them. The splint has helped a lot with jaw, head, and neck pain, and with headaches. The naproxen treats the joint and muscle pain and the antihistamines treat my allergies. Famotidine is for acid reflux. I've had that most of my life, too. It also goes along with asthma, allergies and autoimmune disorders.

The two big things that helped me besides better medicines and a great bed were getting divorced from a husband who had no empathy for anyone who suffered anything, and I was laid off from a very stressful job. I now work from home as a consultant. The money isn't nearly as good and I have no insurance (my son is on Medicaid) but the reduction in stress has been a Godsend. My income increases each quarter, and when I'm up to it I take part-time jobs to supplement what my business earns. I was a chemist in my former career, so one of my part-time jobs is tutoring math and science with mostly high school students. It pays pretty well and the work is mental, not physical. I can also limit my hours to what I can handle. I don't have to take on every student offered to me. I can also choose how late after school I work each day and if I work on weekends or not. Having my own business allows me to take time off when I'm not feeling well and allows me to work evenings and weekends when I am feeling well without a commute or need for child care.

If you're not stable, I urge you strongly to seek individual treatment for each of the symptoms as well as for the overall illness. In the last 7 years or so, I've seen a number of medical subspecialties arise. Pain management and treatment is a very big subspecialty, and many practices use traditional medicine, medications, and non-traditional treatments such as massage, accupuncture, and herbal medicines in combination to find a treatment program that works for each patient. They're treating pain withh combinations just like psychiatrists treat depression and other mental illnesses with combinations of therapies to resolve each patient's symptoms.

The biggest thing I've experienced is the compassion and individual attention to treat all of my symptoms successfully and to find each type of doctor to treat each symtom the best way it can be treated. My doctors don't settle for less than making me totally functional most everyday, just like "normal" people. I'm surprised at this because I live in Baton Rouge, Louisiana -- not exactly the most up and coming cultural and scientific hub in the world. But we have some amazingly talented doctors.

It may be because it's nearly impossible to get on Social Security Disability in this state. Doctors are strongly motivated to make us functional and keep us functioning. Few people have any sympathy down here, so they try to make sure we don't need much of it.

It's taken me a long time to get where I am now, and I'm thankful for each good day I have. There is no telling when the bad days might start outnumbering the good days. But I have hope because I was able to get to the place I'm in now. If I get worse, I have faith that better, more effective treatments exist and I can find them and use them.

oops sorry I posted off topic. I was just thinking people in thisgroup may know what I have talked about before and how this transition may be harder on me since I had been diagnosed with fibro, and my mom has fibro, so imagine how crazy that would be to live together now as adults. And then all the stress of moving, but all the joy of being able to do it on my own. Again I am sorry.

I have fibro and so does my younger sister. She is on SSD but I can't get it. I've been a stay at home mom so haven't worked enough. Four Dr.s have all said I have fibro. I can't get a job and have no ins. My husband of 30 yrs just divorced me. He said, among other things "I don't want to put up with that fibromyalgia *^&% either"
I live in our marital home so agencies say I have assets. Can't sell it in this market. The free clinic says I can't get an appt until mid Jan. I have severe depression and have only 2 pills left. I too sometimes have to stay in bed, sometimes for days. It only makes the depression worse but I can hardly put my feet on the floor in the am. One Dr told me it was because of the way I sleep. Toes pointed...NOT! I'm so glad I found this group. At least someone knows I'm not imagining it.
Thanks for starting it.
God Bless

Webduck

I've been posting articles that have to do with pain management to your group, and hope that your find them helpful and appropriate. Your doing a great thing to provide this forum for people to discuss fibromyalgia.

Barry

Hi, Only just found your group. I have Fibromyalgia and ME, I was diagnosed in 2000, but in the 8 years since then, then symptoms and the pain have got worse and worse, I am now at the point where I have never been in so much pain, my muscles are hurting non stop, my pressure points, especially on my shoulder blades burn constantly. Legs and feet swell and it is difficult to walk. Here in the UK nothing specific is given for the pain except painkillers. Sorry if I sound like I am moaning but at the moment I am!

Hope I would be able to help this group too :)

Hello everyone. I have been reading this thread and a few others and I can relate to everything written. I have had ibs and migraines, sleep for days almost with only a few waking hours. People really do not understand how difficult a simple everyday task can be with fm. Then the fog...completely lost phone conversations were my worst.
Lately my greatest struggle was doctors who are apparently inundated with drug-seeking addicts and are suspicious before you enter the office.
My newest dr is pretty darn good but recently while she was away on holiday her clinic partner told me outright he would not write me prescriptions. I did not complain...I just rationed what I had left and waited for my dr to return. Believe me, if I had made a fuss it would have confirmed the partners suspicions that I was a drug abuser. So unfair it feels cruel.
I look forward to getting to know you all. petal

Can anyone help me to navigate this site and find a conversation to join in? Is there a thread for introductions? I am feeling a bit lost in here. thanks, petal

I've only recently joined. I would be interested to hear about what other people do when their Fibromyalgia flares up. I know what doesn't work, but I'm still looking for something that actually helps. I can't take Naproxen or Ibuprofen. Tylenol doesn't work for Fibromyalgia. I've tried various SSRI's, but I'm still searching. I'm unable to take narcotics. I did poorly on Tramadol, too. Wow, I feel sorry for folks that have something like RA on top of Fibromyalgia.