Fibromyalgia

lifeisbeautiful · Nov 5, 2004

For all of you caring, compassionate nurses that :rolleyes: to Fibromyalgia, remember, we use to tell people with depression to 'get a grip' and tell women with PMS that it is all in their head. Fibromyalgia (also known as Myofacial pain syndrome or Fibromyositis) is a real syndrome. It is not the same as achy muscles 'cause you'rr ti-rrrred after work'. Please, tell me you people are not that ignorant to believe that FM is the same. The pain that people with Fibromyalgia suffer is for the most part is constant, chronic pain located in areas of tendon insertion. The pain involves tendons, fibrous muscle, ligaments and "white" connective tissue. It is a form of muscular rheumatisim.

Unfortunately, aside from the 18 tender points that are used for diagnosis, we really have to listen to the patient. Isn't pain what the patient says it is?In time, I believe a test will be developed to help 'prove' that someone actually has it, so patients won't have to put up with :rolleyes: . Llike arthritis, one can have arthritis and results can be negative on blood tests.

As far as patients being seen in the ER for pain relief, to me it is obvious that patients with chronic pain are being under treated. They are not being treated for their pain appropriately and are having to use the ER as a last straw. I feel sorry for these people.

What is it with our society and the resistance to provide adequate pain control for those that are suffering? And from what I have read from many of these posts, only people that have terminal illnesses can be justified for taking strong narcotics. Really? Yes, well heck, let the dying be comfortable and the rest of us that have a few decades left on this planet suffer in needless pain :crying2:

Trauma-tizedRN · Nov 6, 2004

I think Fibromyalgia has become another Boutique Diagnosis, like the old ever so popular Chronic Fatigue Syndrome. While I believe there are true sufferers of both, lots of folks jump on the bandwagon for SSI benefits, drugs, and attention. Makes it bad for the people with legit symptoms....we tend to disbelieve when droves show up in ER with every new pop syndrome that comes along. And yes, females. We help perpetuate so much addiction it's sick....but what do you do when your hands are tied....SUBJECTIVE COMPLAINT....hmmmm, well if I were queen....

shelleternal · Dec 23, 2004

For all of you caring, compassionate nurses that to Fibromyalgia, remember, we use to tell people with depression to 'get a grip' and tell women with PMS that it is all in their head. Fibromyalgia (also known as Myofacial pain syndrome or Fibromyositis) is a real syndrome. It is not the same as achy muscles 'cause you'rr ti-rrrred after work'. Please, tell me you people are not that ignorant to believe that FM is the same. The pain that people with Fibromyalgia suffer is for the most part is constant, chronic pain located in areas of tendon insertion. The pain involves tendons, fibrous muscle, ligaments and "white" connective tissue. It is a form of muscular rheumatisim.

Unfortunately, aside from the 18 tender points that are used for diagnosis, we really have to listen to the patient. Isn't pain what the patient says it is?In time, I believe a test will be developed to help 'prove' that someone actually has it, so patients won't have to put up with . Llike arthritis, one can have arthritis and results can be negative on blood tests.

As far as patients being seen in the ER for pain relief, to me it is obvious that patients with chronic pain are being under treated. They are not being treated for their pain appropriately and are having to use the ER as a last straw. I feel sorry for these people.
What is it with our society and the resistance to provide adequate pain control for those that are suffering? And from what I have read from many of these posts, only people that have terminal illnesses can be justified for taking strong narcotics. Really? Yes, well heck, let the dying be comfortable and the rest of us that have a few decades left on this planet suffer in needless pain

-------------------------------------------------------------------

I just wanted to say thank you for summing it up this way. Your post says a lot...I've been reading the threads and trying to absorb how so many people who have never experienced FM in their own bodies can make such strong statements about all the people who are legitimately in pain even if there are some that abuse the system. I can understand how people with personality disorders or psychological overtones, or drug addiction, or even newly diagnosed people just learning to cope will come into the ER, and possibly manipulate, because I've experienced this as a previous ER nurse. It can be trying and frustrating. Don't let it take away the compassion that may have caused you to want to be a nurse in the first place, I think that is called burn-out??

I work full-time as an ICU RN and go to graduate school, have a family with a child, and have FM. Having been extremely athletic, positive, and healthy physically and emotionally, do you think I wanted to get this disease? It's taken almost a decade just to get a life, a prison almost, of going to bed early, eating right, exercising, and doing all the things I have to in order to avoid increasing my pain. But the pain continues, and that sometimes causes depression, and I have never considered going to the ER or seeking drugs, because I believe you have to learn to cope and move on. However, not everyone is the same. Unless you live blind, or without an arm, or on the street, or with abusive parents that beat you or molest you every day, or with a husband who has alzheimers, etc., you can't really make a judgement about people in those situations that is accurate. I appreciate the wise and non-judgemental people who see this.

Some FM sufferers have never told a single person at work or other places because they don't want to be judged, yet they live in complete pain constantly and manage the disease fairly well, never even missing a day of work. How nice it would be to be able to have a test that could convince others the problem is real, but would we then even receive compassion or encouragement on the hard days or would we get that you hurt too, so our pain must be in our heads or not that bad.

I would love to be free of this. I would love to be able to play tennis again and run without fear of an exacerbation of pain. But I will tell you, you'll not hear from me in the ER or anywhere else and I'll not sit on the couch and feel sorry for myself, but I'll live life to the best of my ability and do what I can and be grateful I can see and hear and walk and enjoy my family. Just because some choose to seek attention doesn't mean others do. And it is difficult for me to hear some of the things said in the thread because of what I live with each day. It's ok that some don't understand, but it caught me off guard that nurses especially would say some of the things said.

As far as an accurate diagnosis, yes, there are fakes and corrupted doctors and drug seekers. But to put everyone in the same category and say it's all crap is unkind to those with FM who have struggled to be normal and live a normal life. I hope none of those who say it's not a real syndrome ever get FM or any chronic pain propblem or disabilty because it truly has the capacity to steal your life away from you if you allow it to do so. Some people will let it, and they become miserable and make everyone else miserable around them and try and get out of their pain by any means. Others cope the best way they can. Please don't put both in the same category. But if you choose to, because this is america, free speech, and right to your opinions and all, just don't forget that true kindness can make the world of difference. :)

Q. · Dec 23, 2004

I hate say this, but since when is Mitral Valve Prolapse a fashionable diagnosis?

I once remember an anesthesiologist telling me that people who are dx'd with MVP usually have a dx of anxiety or other associated illness (FM). Reason being because the anxiety usually causes some doc to do a full work-up and thus find the murmur, thus the MVP.

In other cases people walk around with MVP all their lives and never know it.

teeituptom, BSN, RN · Dec 24, 2004

Well, guess if you hurt all over every day you might get depressed too.....

Or maybe if you are depressed every day you might be in pain due to the depression.

z's playa · Dec 24, 2004

Or maybe if you are depressed every day you might be in pain due to the depression.

Yeah..I'm sure that's it. :rolleyes:

donmomofnine · Dec 24, 2004

I have had FM for about the last 15 years. Only had a couple of flare ups, but always hurting somewhere. Never missed work because of it, but it's tough. Wish I could do more than I can, but am grateful it's not too bad.

Have bouts of doubting I have it, because I don't want it to be so. Just wishful thinking. It was interesting to me that one of the signs of FM is a low pain tolerance. Well, when I had my debridement and skin replacement surgery for my burns last month, the first thing the surgeon remarked about was the "boatload" of pain medications I had to have during the surgery! This was under anesthesia, so it could hardly be "drug seeking behavior" and "all in my head"!

I never wanted to believe it existed, let alone that I have it, but I do. Now I have to take care of myself, including a massage every week!

Sheba817 · Dec 24, 2004

I have this condition. It is in NO WAY similar to general mucle aches and pains. There are days when this condition can be very debilitating.....as far as neurontin goes..........the drug companies can keep it! Mark my words...it won't be long until the FDA will have to pull this med off the market along with their current Vioxx, Bextra and celebrex. The best drug for this condition is any of our basic narcotics which have worked for years without causeing heart damage, MIs and strokes. On my worst day, one Lortab bid takes care of the pain.

z's playa · Dec 24, 2004

I have this condition. It is in NO WAY similar to general mucle aches and pains. There are days when this condition can be very debilitating.....as far as neurontin goes..........the drug companies can keep it! Mark my words...it won't be long until the FDA will have to pull this med off the market along with their current Vioxx, Bextra and celebrex. The best drug for this condition is any of our basic narcotics which have worked for years without causeing heart damage, MIs and strokes. On my worst day, one Lortab bid takes care of the pain.

I totally agree with you. As long as it is not an everyday occurence, why can't a person take a narcotic for breakthrough? That's what it's there for! I can't believe how much time is spent trying to avoid a narcotic that is only needed once in a while. Yes...yes...i know one must avoid becoming addicted but if it is truly only once in a while...there is no harm done.

My drug of choice is Naproxen...its my "diet" (with Cytotec to protect my stomach) well guess what? Its now linked to heart attacks and strokes too. I'm thinking if you look hard enough..you'll find a link to almost anything. :rotfl:

auroranae · Dec 24, 2004

I am having a mild flare up that has been getting worse over the past few days. I was doing really well and only taking naproxen every now and again. I tried Soma which did help a little, but I had an allergic reaction to it and can not take it anymore. So I have gone back to the naproxen and now am worried about the long term side effects from it. I had a virus infect my heart last year and my heart muscle is still weak so any possible heart problems from any of the meds that give any degree of relief causes great concern. I have never used narcotics for my pain. Not that the pain is not bad enough to warrant them, I just am not able to function and take care of my home and family while taking them. My luck I would be zonked on the sofa and the boys would catch the house on fire. I can see me being so out of it the house goes up in flames while I lay there looking at the pretty fire. I am extremely sensitive to narcotics so they just are not an option. Does this mean my pain is less or that I am not really suffering with fibro? No- it just means that I grin and bear it and try to keep going.

I have found out that alot of others are like me. As long as they are moving they are fine. It is when they stop moving that the pain hits hardest and life becomes unbearable.

Which comes first-- the depression or the pain? Does it really matter? One begets the other in a vicious cycle until everything is connected to everything else. Have pain can't sleep can't concentrate can't keep up at work can't keep up at home have pain ... breaking the cycle is the key... but no one seems to have the key that fits everyone. Certainly not the one that breaks my cycle. Treating the symptoms of the problem don't fix the underlying cause so.... depression or pain first is the not the question. The question is how do we stop both and thereby stop fibro flare ups and give quality of life back to people like me who are busy, active and intelligent human beings that can be reduced to a lump on a couch if the pain is bad enough?

donmomofnine · Dec 24, 2004

I feel as if stress brings on my flare ups. I take flexeril at hs about twenty nights out of the month. I think it helps. I take ibuprofen during the day, but try not to take it every day.

MryRose · Dec 30, 2004

I feel as if stress brings on my flare ups. I take flexeril at hs about twenty nights out of the month. I think it helps. I take ibuprofen during the day, but try not to take it every day.

Have you tried physical therapy? I have PT with someone who does a myofascial technique that is wonderful. It keeps me going and tho I have pain, I am able to function very well. I tried 3 PT's before finding this one. I am fortunate to have excellent ins and can have as much PT as my MD orders. My MD is well informed with FM and knows me well. He Rx's whatever I need, which is once a week or 2x if it's a bad week.

I also was taking 880 mg Naproxen daily..... but now I'm cutting back with the news about heart risks. I have noticed an increase in pain with the decrease in meds. I'm hoping it will level out again with time. I also have a very low pain tolerance threshold.

I hope that everyone will be a bit more compassionate with those who come to them for help with FM. It's a very real illness and very painful.

Remember.... At one time all the testable diseases had no tests either!