Whenever someone asks me "what is wrong with you?" I explain to them that I have fibromyalgia and they look at me funny and ask "What's that?" I tell them they don't want to know. I end up telling them what it is anyways and then I get the remark "well if you would get up and do something about it it would go away. Yeah right is my response. I feel like sometimes wishing this stuff on them so that they would get it and then they would know how I feel, but I don't. I behave myself and go on. I also tell them that they shouldn't remark about what they don't know because one day they may have this stuff and then we will see where they are then.
All I can do is sit and cry as I read the top 10 things not to say
I am 52 and have been dealing with this for over 12 years
I kept it to myself for so long because I didn't want to accept it
I was embassessed by it
I have always been a very outgoing, energentic, confident person and now I am close to being a loner
Thanks just for being out there
I'm 52 also and have had fibro/CFS since about age 10. It has come and gone over the years but by the time I reached 45, I could no longer work. I couldn't use my hands for anything. They were burning in in extreme pain. I couldn't bend my elbow to drink from a glass and would have extreme pain in my knees and ankles causing me to fall. In comparison to a neighbor with MS at the time, we both had the same symptoms as many FMS/CFS symptoms cross over many other AI diseases. I've been mostly bedridden for the past 3 months as I've just gotten over cancer and radiation for the third time and had major stressors from family over the holidays who don't believe that FMS/CFS is a disease.
Karen, You are a very brave soul to tell us of your sadness, because we all know how hard it is to accept a disease we cannot fix. I've finally gotten to the point of telling people why I wasn't at church, or somewhere else, etc., because of a flare up, or fatigue, or otherwise. This is not your fault. You are still a very vital part of society regardless of your health issues. I am hoping your doctor is medicating you individually in such a way that you aren't suffering too much from depression and pain. If not, you need another doc. You are worth it. Diane
You have touched on just about every remark I have heard which made me walk away feeling so misunderstood and so insignificant. Thanks for that wonderful article. I appreciate it much.
Debra
I knew I had fibro since the '80 but my brilliant dr. asked if I had been reading "some womens' magazine" I changed Drs. and said nothing about it for 15 years, just suffered and walked the floor at night. Then I discovered my sister had been diagnosed with it. I then got the courage to ask my current Dr. about a test for it. He said there is none--just pressure points. I was put on Lyrica. My life changed, we moved, stresses, 2 sister died within 3 months of each other, I went into acute kidney failure, bad 4 years. I then began having a death wish. Finally I began having suicidal thoughts--plans, actually had a loaded gun under my bed. I was in torment. I told a new Dr. (who only saw me for 5 minutes) of these thoughts and he immediately told me he wanted me to go to a hospital in a newby town in an ambulance--I would be there 2-3 days, get my meds straighten out and have counselling.. I said my husband would take me. We went--I took only ID--no cash, credit cards--nada--got there and it was a syc ward--I would have to check in for 2 weeks and all patients were senile and alzhmers--I said, Well, I don't belong here!" The very next day Lyrica came out with suicidal warnings. I quit cold turkey and have not had any more suicidal thoughts. I NOW TAKE SUPER B COMPLEX, B 6 UP TO 500 MG DEPENDING ON YOUR WEIGHT AND MAGNESIUM--NO MORE FIBROMYALGIA! Praise God! Okie from Muskogee
I've had FMS/CFS for 42 years. Was admitted to the ER again last Friday night for uncontrollable pain. Did you know not one medical school in the US has any curriculum on FMS/CFS? I've been to all the doctors, rheumys and neuro guys I could stand. No more. They are flat out idiots especially the ones who claim that they are "specialists." Its the old fashioned snake oil theme for most of them, if they believe in it at all. Everytime someone says, you should exercise more, I know that's not a person who has FMS/CFS. Google deaths from FMS/CFS. They go hand in hand, and you'd be surprised the shocking number of people who either commit suicide, die of heart or kidney failure, or cancer. I believe its all related to the XRMV retrovirus as I just got over my third cancer. What non-believers don't believe is that this disease is progressive, and any doc who says it isn't is one you want to stay away from.
Oh for the love of God, someone who talks like me. Fifteen years of quacks for doctors, until I found a female internist who started taking my story. I looked up at one point and saw tears running down her face! She was shocked at the treatment I'd received from other docs. One doc told me I needed a new hobby because I spent too much time thinking about myself! I remember telling that jackass that I'd rather be walking in the park than looking at his ugly face. Anyhow, I've been with this wonderful doctor ever since, and it's a joy to be treated like a precious human being. I've occasionally received phone calls from her checking up on me. Can you believe it?? And I think one reason we suffer from depression as well is because of mounting medical costs. A contact in New Zealand freaked out at me one day when I told her I almost had my hospital bill "payed off", after 5 years of payments. This is an American friend with fibro who cannot come home because she cannot afford to pay for her treatment here. Diane
Thank you Diane. I'm making plans to move to Reno in order to find a doc who's knowledgable. This is my life and I intend to make the best of it no matter if I have to move and sell everything I own. I'm hell bent on finding compassion, caring, and therapy. I refuse to die in this state, and I'm not giving up no matter what.
I have had a lot of health issues since 2004......mine started with carpal tunnel....in the right hand...and continued from there...one thing after another....I have tried a lot of different medicines but my body must be really sensitive....because I would have more side effects and something else to deal with.....so I did my own research and I have found a way to "control" my pain.....I take vitamins and supplements....a magnesium and malate combination supplement.....Omegas, Super B Vitamin, Vitamin D and Calcium...and others....but these are the main ones which help me control my FM pain...
A few years back....I got really sick....and I tried to figure out what was going on with me....my doctor insisted that I was just depressed....and this is what he was treating me for...I continued to get worse....even though I was taking an anti-depressant for depression.....ok...now it this was my only problem....I did not think I would continue to get worse....so I decided to try to figure out myself what was going on with me....I researched my symptoms and it kept referring me to parathyroid problems....heck...I did not even know what a parathyroid was.....but I continued....OMG...I found out that I had 14 out of 18 symptoms of parathyroid problems....and I spoke to my family doctor about my thoughts....he told me out right that I did not have parathyroid problems....ok....he was the doctor.....so I just continued to try whatever he wanted me to try....only I was not getting any better....
Finally....I decided....I had done enough research myself and I now knew that a scan was available that I could have to see if parathyroid was really a problem for me....my doctor did not like my idea...and then I explained to him that I have too many symptoms to NOT have something wrong....so I then told him....no, I actually insisted that I have the scan....he explained to me that this was an expensive procedure...and that he really did not think that I had parathyroid problems....so I then told him...I really did not care how expensive the scan was....I wanted him (the doctor) to prove to me that I did not have parathyroid problems....so he finally agreed to give me a referral....
I had the scan...and I really wanted to see the end results....but the person who did it explained to me that my doctor would be contacting me with the results when he got them....so I waited...
Finally, a telephone call from the doctor's office...now previously the doctor had always called me with results from whatever tests I had.....not this time...the woman who explained to me she was the doctor's nurse called to tell me that the doctor was making an appointment for me with a surgeon.....OMG....sometimes it pays to take control of one's body....so now I felt like I was getting somewhere with the health issues that I was having....
(NOT SO FAST).....I went to the surgeon to talk to him about what was going on...he reviewed my medical records and asked me some questions....one being the fact that my Vitamin D was almost non existence....did I know? My doctor told me that my Vitamin D level was low....but he did not tell me how low....the surgeon then explained to me that he did not think that I needed the parathyroid surgery.....OH NO....so I am now back to square one....he did tell me that he thought most of the pain I was having was due from the low level of Vitamin D....
I was not a happy camper......I wanted and needed answers....I need relief....and I was not getting anywhere....so I looked at this surgeon...whom I had just met and I said....ok...if you can not help me....can you please point me in some direction to someone who CAN help me....I then told him that I had 14 out of 18 symptoms of parathyroid problems....and I thought for sure that this was the reason I was having so many issues....this man leaned back...and then said....well....sometimes...the tests do not always tell us what we need to see....and I think that while you are here....I will just do an ultrasound.....just to be sure....
OK....so another test....but I was ok with this....anything to get to the bottom of what I had so many problems...and a lot of pain....I certainly did not want any more surgery....but I sure did want to get better....and the doctor then left the room and said he would be back in a few minutes....
He returned and said he was ready to do the ultrasound on me...and I was lead in another room....he then proceeded to do the ultrasound on me.....(right there in his office).....and as I lay there....he was doing the test and talking to his nurse at the same time....but I could not hear what he was saying....and I thought he was never going to get finished with the ultrasound....so I finally asked him....ok...have you found anything or not.....he then told his nurse to turn on the lights...and he stated....well...I will tell you that the mini surgery is out of the question for me to do....(we had talked about the mini surgery, if I needed to have anything done) and then he told me...that yes....I did have an issue here...and the scan had not pointed out the problem.....ok....so I already knew enough about the parathyroid glands to know that most of us have 4 very small glands...(the size of a grain of rice) and that it only takes 1 of them to cause problems for people....the surgeon then begin to explain all of this to me....and then he said...you have a gland that is the size of a pecan in a shell....to give you an idea of how large it was....and it definitely needs to come out....and as soon as he could schedule the surgery....OK...so now we are getting somewhere.....I had begun to think that none of these doctors was going to figure out what was going on with me....and that I was going to die first....finally....we now have something....as he was explaining the process to me....I did question him about having a really bad cough along with a choking sensation that I had had for about 6 weeks or so...he immediately told me .....no...that has nothing to do with the parathyroid problem....and explained to me that I must have something else going on also...but he would take care of the parathyroid problem....
Returning home that day....I told my husband that I truly thought that the choking thing and the cough had something to do with the parathyroid problem....and then we both laughed.....I told him...I guess time will tell....
AND IT DID....on the day of my surgery....the procedures were explained to me...and what would happen....they took a tube of blood to check my blood calcium level...and would then take another tube after the bad gland was removed...and compare the blood calcium levels to make sure that they had removed the bad gland....which is just what took place...
The surgery was not a pleasant one for me to have....but with recovery and time....I did get better.....my blood calcium level before the surgery was 88....almost 10 times what it should be.....OMG....and after the surgery...this dropped to 22....since too high...but it would be rechecked in 2 weeks to make sure everything was ok....so time again would tell....
I was extremely sick after the surgery....I had about 4 really bad days....I finally was able to get up and take a shower....on the day my husband returned to work....I finally was beginning to feel better....but this indeed had been a big ordeal for me....
I proceeded to get ready for my shower...and what a surprise I got....I took off my clothes and looked in the mirror....and OMG....what a surprise I got....I had hurt somewhat in my chest....since the surgery....but I thought it was just normal....since the surgery had been more than I had expected it to be....but as I looked in the mirror....I had a huge bruise....the shape of a heart...right between my breasts...this really scared me right off....how in the world did I get a huge bruise like this by having surgery on my neck....I called my husband who had just returned to work and talked to him about this....he told me that I needed to call the doctor's office and speak to someone about this.....
I did...and finally the doctor returned my call....I then proceeded to explain to him what I had found....he did not know why or even how a bruise had occurred there....but he did say that if it got any worse....for me to call and make an appointment and he would see me....otherwise I was to come back in 2 weeks for another blood test....and update on my surgery...
Two weeks later....I returned to his office...and the bruise was still there...not quite as bad...but it was very obvious that he would be able to "see" that I had not lost my mind in the process of having the surgery....he had also explained to me that I was indeed correct....the parathyroid gland had tried to attach itself to my esophagus and that was the reason that I had a choking sensation.....and then I then proceeded to remind him that I had spoken to him about the bruise....and I opened my shirt up and showed him the heart shaped bruise between my breasts....he scratched his head...and then explained to me...he now figured out what happened....he had problems getting the parathyroid gland out...and he had propped his elbows on my chest trying to do the process....now this man was a large man...and now I understood why I had an awful bruise from surgery.....and why it was a heart shaped to boot....I, at least now, knew.....I am not quite sure that had I been the doctor...I would have explained this to a patient of mine....but at least he was honest...when he looked at it...he knew right away....what had caused the bruise...
OMG....a patient never knows what happens in surgery....afterall....I was asleep during
this operation....and so I had no idea what went on....but now I wonder...each and every time I had to go....what is going to happen this time....again....time will tell...
Recoverying from this surgery did take time....and right after the surgery...my calcium levels were messed up and I had to take calcium for a few days....to regulate that...I had an awful ugly scar...and what made it even worse was the fact that a clear bandage was put over it....but I survived....
I often wonder....what would have happened to me....had I not insisted on my doctor sending me for the scan....and then if I had not insisted with the surgeon to point me in some direction for someone to help me....what might have happened....if the surgeon had not done the ultrasound on me that day....and just sent me on my way....
I have learned a very valuable lesson from all of this....I am the only one who knows and understands how I feel....the doctors do not know....my family and friends do not know....my pain is what I know I have...and I am the only one who knows when there is something going on which is NOT NORMAL....
After the surgery....I learned that my Vitamin D level was only 12....very is too low...and the doctor did put me on a prescription of 50,000 units for a couple of months....and after many months of taking the supplements and recovering from the parathyroid surgery.....I began to feel less pain....so I am sure that my pain was a combination of both....parathryoid problems and low Vitamin D.... I now make an effort of have the Vitamin D level checked.....at least once a year...and my level is still on the low side....
Now....if only I can find a cure for the chronic fatigue that I have every day....I continue to try different things for this....
My next doctor's visit is going to be with a woman hormone specialist....that I will see this month.....I hope to find more answers then....that will help me feel better....
I know that my reply is long...and I am sorry...but I hope that one person might benefit from me sharing this.....I often wonder...if this is the reason that women die each and every year from heart attacks and strokes.....
Hyperparathyroid is sometimes a distress response when the body is very short of vitamin d. It is a last ditch attempt to regulate the blood calcium levels. Sometimes correcting the vitamin d levels fixes the problem. If your body is that badly out of balance you probably need to build up your vitamin d intake slowly from about 1000IU of D3 a day to 1000IU of d3 per 25lbs of body mass per day. After about 3 months get your vitamin d and calcium levels checked as you may still be depleted.
I have FM. Just had a laperoscopy on Tuesday,many other test the past year,none of them pleasant. Need a new Doctor . I have tried Lyrica felt awful.
I now take oxcezpam,tylenol sleep ,and nothing for pain. I need new info on meds, My family Doctor is not interested. I need to have suggestions when I see him next.
I have had it with the tests, colonoscopy ,surgrey my abdominal pain is most likely from FM. I don't know why he is not on board with that.
New info or suggestions would be great. Thank you. Heather.
As you probably know, in addition to Lyrica there are two other medications that have been approved in the U.S. for treating FM – Cymbalta and Savella. Since they are both very different than Lyrica, perhaps one of them would work better for you. There are also a number of other medications that are frequently prescribed off label for FM. Personally, I've been taking tramadol for many years and it has helped me quite a bit. I'm still not 100% pain free, but have much less pain than without it and it helps me to function well enough that I can work from home and continue to support myself.
Everyone is different and it usually takes some trial and error to find which medication(s) work best for you. Here is a link to an article that talks about all the different types of medications that may be used to treat FM: Medications Prescribed for Fibromyalgia
I have been taking the newest drug..savella...and what is it really doing for me...I am in pain constantly and so fatigued....is it for depression only. I am not as depressed. I am just so tired and never sleep well. I have been "turned over" to a pain management doctor and he will not even give me opiads. He took a MRI and says I have a disc pressing a nerve..thus no pain meds..he is doing injections.....I want to scream at him that I am in so much pain that I can't do the simplest chore. My thought process is dwindling and I am making terrible mistakes in reports I turn over to lenders (Real Estate appraiser)..and I have lost a client.
My father gave me some 10 ml hydrocodone and two of these twice a day are helping my pain tremendously. My pain doctor says my dad should be locked up. What????..they help!!!!!!.......What can I do to get pain meds......they really give me better days and I can be a productive person. Why are they developed if they aren't used on FM patients for a better quality of life. I know they will not take the pain away but they sure do take the edge off.
HELP.........some days I really wish this FM was fatal.....at least then I would know that the pain would soon be over.
Hi Timmy,
I'm sorry that you're having such a hard time getting the pain medications you need. Unfortunately, your experience is not uncommon. More and more doctors are afraid to prescribe opioid medications for fear of the DEA. Most patients have to try a number of different doctors before they find one who will be willing to help.
I can tell you why your pain management doctor reacted so strongly when you told him about the hydrocodone your father gave you. It is illegal both to take another person's prescription medication or to give your medication to another person – even if it's a close family member. That goes for any prescription medication, but of course the biggest concern is when the medication is an opioid. If a doctor knows you're taking someone else's meds or are willing to share your own, there's very little chance he will ever prescribe an opioid for you. Doctors just can't afford to take the chance of losing their license and/or being prosecuted because one of their patients misused his medication.
I can sympathize with you. I've had some of the exact same thoughts as you about sometimes wishing it was fatal. And I've gone through the same problems of trying to hold down a job while suffering with FM. Most people who are successfully managing their FM use a combination of therapies. Usually no single medication or therapy will do the trick. Here is a article about some treatments that may help: Fibromyalgia Treatment
Don't give up! Keep trying doctors and treatments until you find the combination that works best for you. – Karen
Cymbalta and lyrica are mild drugs that the pharmaceutical companies dreamed up as permanent relief for fibro. They are neither. Each person reacts differently to the side effects of each drug. Unfortunately, most of us have other conditions, many not diagnosed yet, that cross over into these drugs. My stomach, interstitial cystitis, and bi-polar meds make it difficult to mess around with these meds. Both of them left me puking for days, and it's safe to say, on bad days, vicodin doesn't interact with any of my other drugs. Doctors don't want to admit to that, but narcs and medicinal marijuana really can be a godsend for some people.
I love your responese to the awful things people say to us. My sister said that her doctor says she may have FM and she knows lots of people withit and they all work. What makes me think it's okay to say I can't work. I was so insulted. My doctor, my therapist, and a disability Judge all aid I can't work. I just cried, knowing that my sister had the balls to say that to me. I have done alot of online and reading research and told ehr to tell her doctor what her symptoms are, because joint swelling,visible swelling, is not usually a symptom of FM. Then I asked if she would want me behind the wheel of a car on the road with her and her kids with the meds I take that give me the ability to get out of bed everyday. She hasn't said much since.
I was first dxed in 1983 by a Rh Doctor as having Fibrocitis which is what it was first called. I had to change doctors shortly after that due to a change in insurance. I had several doctors who all insisted I had RH and that there was really no such thing as FM. I was married to my ex and at times I would tell him not to touch me as even my hair hurt and he would just laugh and tell me that was just my version of the proverbial headache most women complained of!. Now you see part of why he is an ex!. I now see a RH doctor who is very knowledgable about FM anf I take both Lyrica and Cymbalta. I have 60mg of the Cymbalta in the AM and 75 of the Lyrica at night. I used to do it the opposite but found I had a lot of foot swelling. I switched them around and it really helped. The only really bad flare I have had was in October when I had a total knee replacement. I then got a MRSA infection and had a severe flare of the FM. It is now almost back under control as the knee heals. I am going to print out your list to show to friends and family who are sceptical of FM. I would not wish FM on anyone.
A letter from _______ (fill in the name of the person who suffers from Fibromyalgia) If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious illness. Because you didn't know how sick I was, you may have called me lazy, a hypochondriac, or simply trying to get attention. If you have the time to read on, I would like to help you understand how different I am from you. WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA FMS is not the newest fad disease. In 1815, a surgeon at the University of Edinburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes. WHAT YOU SHOULD KNOW ABOUT ME My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real and very painful.
The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. However please remember, stress can affect the body, just as physical pain can affect the mind, causing stress and depression. If someone needs help in coping or dealing with depression, they should see a therapist or Psychiatrist, but it does not mean they are "crazy." It may help you to find methods of coping!
In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability. It is recognized as a disabling condition by the ARTHRITIS FOUNDATION, THE SOCIAL SECURITY ADMINISTRATION and the MAYO CLINIC, among others.
This syndrome may strike life-long athletes as viciously as it does couch potatoes. It can be disabling and depressing, interfering with even the simplest activities of daily life.
(Keep in mind that these things may apply to some, not all of fibro patients)
My fatigue - I am not merely tired, I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.
My clumsiness - If I stomp on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So try to understand if I must decline certain invitations, or go home suddenly. I really can't stand it.
My intolerance - Perhaps I can't stand heat, either, or humidity. I may sweat, profusely. Some people cannot sweat at all and so the heat is even more unbearable! Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And, don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's "patients" suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro, not a cause of it. Some days I may just feel like giving up. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Every day stresses make my symptoms worse and can incapacitate me completely.
My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe Irritable Bowel Syndrome and lose weight.
My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.
My good days - If you see me smiling and functioning normally, don't assume I am well. I am having a good day but I am not cured. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
My uniqueness - Even those who suffer from FMS are not alike. That means not every fibro sufferer may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
wonderful post...
I work with a few people with RA. Of course one of them thinks their pain is > my pain and looks down their nose at me. The other said something interesting the other day; I had commented that my shoulder was bugging me. She said that she thought the chiro had taken care of that the week before. I said that was then and this is now, I'm just glad when I could keep it down to a dull roar. Her response was that at least her's was autoimmune, and that it was a pity mine wasn't because then maybe they could do something for it. That showed at least some kindness.
I have a very severe case of FMS/CFIDS, and the resulting depression does cause death. Many patients commit suicide or die from illnesses directly related to FMS/CFIDS.
I think FM is fatal in a subtle way. My sister lived with the pain and suffering of FM for over 15 years. She had an adoring husband who was her soul mate and a sister who loves her very much. But she was in so very much pain and took so many medications that I personally think she had a death wish. Sometimes she would sleep 20 hours because she just didn't want to get up. She drugged herself with pills to sleep. The last year of her life all she talked about was about what we should do if she died. She had a heart attack and was dead within minutes. I think the constant pain and, prior to the FM being very athletic and fun loving, just drove her over the brink. I think she willed her death. Yes, I believe FM is fatal.
Please accept my apologies for offending you. No, I don't have FMS but I cried many nights for my sister for what she told me she was going through. I heard her pain, her beating herself up over her weight, being clumsy and getting hurt. I didn't judge her. I loved her.
And, yes, I do understand chronic pain. I am a lung cancer survivor who underwent surgery (total now up to 8 for various reasons), chemo, and now need a shoulder replacement with chronic 24/7 pain for over a year. That coincides with 2 compression fractures in lumbar one which happened in 1994. That pain is always with me too.
Please don't jump down my throat because I don't have FMS. It does not automatically mean I do not understand constant pain and what my sister went through.
My apologies to you. I've also just went through my third cancer with radiation. I was admitted to the ER over the weekend for severe pain from my brain stem to my toes and fingers. The problem? No one knows how to treat my excruciating pain. They gave me 10 mgs. of valium and sent me on my way still in excruciating pain, that in addition to vicodin, flexeril, trazodone, klonopin and cymbalta. While I may have had my bouts of cancer and encephalomenningitis, nothing compares to the pain I'm experiencing now. There isn't a day that passes where I don't think about suicide at some point because I feel my life is over. I have no family to speak of and even my only daughter has abandoned me because there is no awareness of this devastating disorder. That, in and of itself, can lead many to suicide. I'm sure you have suffered immensely over your own situation and your sister's situation, and I am truly sorry for you. I think your sister was blessed to have a brother who cared so very deeply for her and what she was experiencing, and I'm sure she knew you loved her. My sincere wishes go out to you for your suffering in addition to the loss of a loved one. Cancer, to me, and I had several severe bouts with it, were like a walk in the park next to the pain I experience with ME/CFIDS. That is not to diminish your pain. I could only wish you the best and a speedy recovery. My thoughts and prayers are with you.
Thank you. Twenty years ago my sister and I, (I'm her sister too), tried in vain just to find a place that even recognized Fibro. As little as six years ago, living in Phoenix, I got in touch with Barrow's Neurological Insutitute and was shocked that they too did not recognize Fibro. They told her it was all in her head. Toward the end she was even on a morphine drip. She tried and wanted to be happy but everytime she moved she grimaced in pain. I now have no family whatsoever.
Please don't give up. There are people who care even though you don't think so. I wonder about the effects of Cymbalta. Two of my clients who were on it tried suicide. When one tried to get off it she was traumatized for over a month.
Hearing how the hospital treated you with Valium disgusts me. Shows me that despite FM is recognized, they still are minimizing it and refusing to provide adequate treatment. They could have at least given you Demoral. Although my sister didn't go through near the medical problems you had, she felt every time she climbed the mountain she kept getting knocked down.
I don't feel sorry for myself, I'm just tired of the hits that keep coming. You've climbed many mountains. Don't let them win. I will keep you in my prayers.
No,you don't die of it...... I am diagnosed with fibro. My mom had it before me but it was never diagnosed,before I was hit by IT. I, Myself told her at a point that she might need to do some exercises, walk outside,see people, I feel so bad because I know now how she felt.
My mom did commit suicide, not one with fire arm or pills. She had cancer in her last few year, One that can be treated easily,she did not tell anyone in the family, refused treatment and one day refused to eat drink, she let herself die of malnourrishment, my dad could not do a thing for her. Before she passed away after I travelled to see her. Travelling for me was very difficult at that point but I had to see her and tell her how sorry I was for that time I tried to tell her what to do many years before. I did believe that she was in pain.I was just trying to find the answer for her it was so hard to see her in pain. She told me that she was so tired of living with all that pain, that God send her that cancer as a ticket to leave.
Oh I have heard it all.Id like to hear some comments from men with fibromyalgia.I have heard some already.Yes I look good but feel like Im dying inside.By the timeI put makeup on(if I do!), the symptoms have been aggrivated worse.So do I not look good and people think?If I could exercise I would(sometimes I get lucky and do)...My children are the ones closest to me and also do not understand.But they are young.They don't realize they are insesitive on the most part.They truely want to say I am trying to understand.Best wishes to all
I have had FM for over 20 years, I don't know how many doctors I have seen, but the diagnosis was not made until 6 years ago. And the thing that aggrevates me the most is to explain that depression plays a big part of FM, and don't even mention the fact to anyone because you get "Why are you depressed"? Well, how would you feel if you hurt all the time.
I wish I had some way to let others know of the pain, maybe a pain monitor that flashed bright lights. I certainly would not wish this on anyone.
Thanks for an excellent list that also includes humour. With the number of comments, you've obviously touched on something that we all deal with. A rheumatologist I had a number of years ago told me something that etche itself in my brain: he said I had a laissez-faireattitude toward healing. Yikes. This after telling him that I did chiro and physio, exercises and stretches and had completely changed my diet. The reason he thought I didn't give a damn? Because I was unwilling to take the medication he suggested because I was worried about side-effects. Oh, the ignorance. Well, many years after that I used his phrase to launch my humour blog, "Chronic Holiday" that is based on the weird things that a person with chronic illness goes through/hears/deals with.
Thanks again for your list.
This was a great article. I can't begin to tell you how many well meaning people I have come across who have said something, thinking it would be helpful, when it really wasn't. The one I have heard the most is "It's all in your head". People who say that remark have bigger problems than the person with FM does.
A well intended friend called me yesterday afternoon to let me know that the Magical Dr. Oz was going to talk about chronic pain and ways to get out of it ! Okay I will watch even if he is not on my favorite list,
Well 12 nins later( with ads) I had not learned anything new except that it's all in my head perhaps. 2 or 3 little tricks and that's it. About same results then the fibro one. I want to vomit. I am so tired of pple calling me with new cures that I want to SCREAM @#$%^&*(
What is truly unfortunate is that, in my own experience and in the experience of every FM person I know, the doctors who we look to for help are the people most likely to say all of these things and much worse. Doctors no longer have the excuse of ignorance. They simply do not care. They want patients with simple problems who will fit neatly into a 10 minute appointment schedule. They also want to maximize profits. We do not have health care. We have the med biz.
After 20+ years of having FM, it is my opinion that we need to get mad, not sad, when people insult us in these ways. We also need to verbalize our anger and to do so loudly, forcefully and immediately. Patiently explaining ad nausem to people who do not want to understand gets us nowhere. Biting their heads off as soon as they tell us how everybody works with pain and fatigue, or mentions someone like that Oprah annointed quack Oz, at least shuts them up. I also believe that if friends and relatives, including spouses, siblings, parents and children, continue to say these things, the only rational thing to do is to cut off all contact with them. Suffering in silence or in sorrow gets us nowhere. Aggression, at the very least, gives us some peace and quiet.
I was diasgnosed with Fibromyalgia eight years ago. Five years ago the Rheumatologist I was seeing at the time referred me to a pain clinic. I thought "great! if anyone would know about pain it would be the doctors at a pain clinic!" I was called in to see the doctor. I explained to the doctor the diagnosis I had been given three years before and explained in depth about my pain. He conducted about a 1 minute examination certainly finding the pressure points of pain and sat down. He then told me he would refer me to a physciatrist as my problem was that I was depressed. He also told me more or less that he did not believe in the validity of Fibromyalgia. Needless to say I was heartbroken. I simply got up and walked out determined to be a lady and not allow myself to get down on his level. I cried for hours. Since then I am glad to say I have found a sympathetic Rheumatologist who prescribes what she can in order to help me, but of course the terrible pain and all the other symptoms that go along are just as prevelent today. I tried Lyrica and could not continue to take it as it caused me to gain to much weight which we know will only cause more pain in our body. I do take tramadol and in many ways it has been a life saver for me. It doesn't always last until the next dose, but while it does it gives me the ability to at least get up and function for a little while. I truly hope one day they will discover a medication that will give great relief or even better a cure.
i just had my doctor tell me i might have this ,i am 39 years old and lost my husband in o7 my mom was murdered in aug o9 but i have been hurting all over for about 5 years ,im allowed to lortabs a day and it does no good the only thing that helps is oxycotin and noone likes to give that out it b.s. its hard for me in the mornings or at night to even shower ,bend or do anything ,my whole body hurts so bad i dont hardly leave my home cuz it hurts to even go get food at the store,these doctorsneed not to be so damn scared to giveout pain pills if we have blood work to prove we have this ,
I'm so sorry to hear all you've been through the past few years. The kind of emotional traumas you've experienced can trigger fibromyalgia or at the very least make it worse. Unfortunately it often takes quite a while and a lot of trial and error to find the treatment combo that works best for you. Here is a link to an article that might help you in your search for the right therapies for you: Fibromyalgia Treatment
I hope you're able to get help for your pain very soon.
Dallas, That's because some doctors are idiots when not reading literature that's been out for decades. You cannot become addicted to pain medicine while in pain. I saw it time and time again while in nursing for 23 years. Studies up the ying yang to support it. I had to give up my career because of this disease, and while it was a real kick in the pants, I've managed to accept it, even though I get sick of people saying, "What do you do?"
I hate when people say these things! And sometimes they don't mean to offend but they end up doing it anyways.
What really gets under my skin is when people say: "I understand what you're talking about, I'm tired too." and "Stop being a wimp. Come to school and stay here."
It takes all my strength (literally) to sit in those horrid chairs all day, fight the clouding fatigue and pain, and actually learn! I don't need others telling me that my pain and fatigue are nothing. My friends and family, thought, have been really supportive.
If I ever mention I was diagnosed with FM, I get politely dismissed and barely a comment. My problem is I have some symptoms, but none are very severe. I keep wondering if they were wrong and so I don't really identify with the people I read about. I was diagnosed twice. I guess what I need to know is it is a mild case or if I have something else I should aware of. I went on this website because I have a lot of problems with my feet. The one that puzzles me the most is that I have pain on the top of my feet. Like the tissue between the metatarsils of my small toe and the one next to it are tearing. Painful to touch and after a long day, just plain painful. Got any ideas?
I read this post and loved how you worded everything. My mother and I hv fybromyalgea and for years and years the doctors told her it was either in her head or sent her out for more testing. she finally got a dr with some common sense and he figured out what the problem was. My FM reared it's ugly little head shortly after I had my second daughter. I for the longest time I had the strongest case of the flu ever known in history. My mother had me look up some information on FM and then I went in and was properly diagnosed with FM. The easiest way I have found to explain what it's like to someone who has no idea is to tell them it's like hving the flu everyday but the pain can be times 100 or more. But it does very day to day as we all can hv good days and definetly not some good days. I have met many more ppl with FM and it has been a miracle to have the understanding and life support I guess you can call it.
I just wanted to contribute another comment about the statement listed "We all get aches and pains as we get older". One of the deceptive aspects of the Fibromyalgia commercials are that they tend to exclusively feature 40+ year old women. This dismisses the large portion of Fibromyalgia patients who are in their teens or 20's. I've had Fibromyalgia pain and fatigue since I was 14 years old. One thing you might want to add to the above statement is that this particular type of pain doesn't discriminate based on age.
Hi, what a great article. I love how well you wrote it from an objective view. I've written the things I don't like hearing, but people who need to hear this (our friends and/or family) would (hopefully) be much more likely to read, enjoy and actually learn from your kind approach.
The last one is right on as a top pick! I say the same thing now. I'm not sure people really get it.
Thanks for the good read.
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i like # 2 the best.....scooter wrote on june 1st,2009 the 13 things you don't say to someone with chronic pain...i have it printed out and refer to it often (and have sent it to friends and relatives) ....scooter's #1 is your # 2..."YOU DON'T LOOK SICK"....i am entering my second decade of chronic pain and the hardest thing of all is to put on a smile and "look good" everyday so people don't pity me and question me and try to adjust where i should sit, etc.,etc.,etc.....it is much easier for me (and i have to have a life) to be brave,smile, and act like nothing is wrong...BUT...i live 24/7 at an 8 pain level knowing i will wake up the next morning to do it all over again!! luckily i have a loving understanding family which is the best medicine ofall
maybe you could reprint scooter's list again...it is one of the best shareposts ever. beanie
Thanks for reminding me of Scooter's post. Here's a link to it for anyone who would like to read it: 13 Things You Don't Want to Say to Someone With Chronic Pain
Hi,i was reading what you wrote,the same thing happen to me.but i was operated 9 years ago of cervical neck,then after the operation been in cronic pain for all this years,went to doctors and neorologist and the last thing they wanted to do,was to try the electronic machine on me,because now i have 2 hernias,one on my neck and lower back..constantly 24-7 in pain..i say like u say,thanks to my familly that they r there to help me...i dont want to feel pitty from nobody,,,so i make believe i'm ok...but in reality i want to die...cannt sleep,hardly walk,bend..that is so pittyfull.sorry for the writting...can someone tell me what to do... try to fill for social segurity but was denid for credit points...but they made me sign a piece of paper for disability...i'm afraid to do the electronic machine in my spinal...
Hi Ada,
I'm sorry to hear how much you are suffering. I'm just wondering if the electronic machine you mentioned is a neurostimulator. I know of several people who have them and they can be quite good at significantly reducing your pain. I can understand why you would be afraid – it sounds scary when they talk about putting anything in your spine. But they generally do a one week trial of the neurostimulator to see if it helps you before they actually implant the main part of the device. Here a link to a couple of videos about neurostimulators that you might want to watch as you consider that option: Neurostimulators
Good luck! – Karen
Are you talking about a tens unit here?