What do you think of fibromyalgia?

studentnursemon86 · Apr 9, 2014

I always believed it was a "catch all" until the last year so when I noticed some changes in myself.

Joint pain, headaches and fatigue; more so after working 3 12 hour shifts or even after getting less than 8 hours of sleep. Some days I am off I will sleep the whole day. For 16-18 hours I'll just be in bed, unable to get up because of the pain in my legs.

I was worked up for RA. Never got tested for lupus or Lyme. They found my vitamin D levels were low, even though I was taking 1000iu a day.

I'm hoping the high dose vitamin D will help? But I'm 6 weeks in and not feeling much of an improvement.

I fear being slapped with a diagnoses of fibromyalgia due to the stigma. And I feel like it would just be my doctor giving up on figuring out what is wrong.

LTCNS, LPN · Apr 9, 2014

OP, thank you for starting this thread. I honestly believe it has given a few healthcare providers the courage to "come out" so to speak. Fibromyalgia has such a stigma attached to it, some people are afraid to admit they have it for fear of others thinking they're mental.

As far as depression? A couple of people stated that if someone is in pain day in and day out, of course that person will be depressed. This is so true! There are days that are so bad you go to the restroom and cry, and all you can do is pray the day goes by quickly so you can just go home and go to bed. It is very hard to work full time when you're in almost constant pain, but so many are like me and have no choice. I could work part time and my husband and I could make it, but I have had no luck in finding a part time job. I could go to an agency but there are no guaranteed hours with an agency. When I say part time I mean 24-30 hours per week.

People who know I have fibromyalgia ask me why I don't apply for disability, but until fibromyalgia is recognized as a very real, debilitating condition, it is almost impossible to be approved. I also have idiopathic neuropathy and a non-healing lower lumbar fracture with radiculopathy which is very painful, but I don't know if that would qualify even in combo with fibromyalgia so I push on by the grace of God.

To those who have fibromyalgia and other chronic pain conditions, ((((HUGS)))) to all of you. Stay strong!

Thanks again OP for starting this thread. I don't feel so alone now.

allnurses Guide · Apr 9, 2014

Starting this thread was very courageous. I have been blasted before for starting threads far less controversial than this. I credit both the OP and those discussing for the open and frank nature of this. I know it will help my practice tremendously.

valentine519 · Apr 9, 2014

My chronic fatigue and fibro started with mono. I basically got mono and never got better, only worse.

allnurses Guide · Apr 9, 2014

Oooo, I could see that happening so easily. I had mono when I was pretty young - 17 - but it took me around 7 months to get back to a normal energy level. That is an interesting link....

Bajasmom · Apr 9, 2014

My a&p II class had explored this disease and what I took from it was it is over stimulation of nerves. Which would make sense to coincide with depression and autoimmune diseases. I personally have Trigeminal Neuralgia I went through tests to confirm, when I say confirm I mean confirm I didn't have anything else no tumors MS ect. there is no one test to confirm trigeminal neuralgia or atypical face pain. Nerves can be tricky. Tn used to be considered mental illness too. Stress brings on my attacks ( prob bc on tension pinching nerves) also illness ( any major inflammation). Try and put yourself in your FM patients place, they don't know what's wrong other than what the dr tell them. They don't want to hurt/ physically or mentally.

bradleau · Apr 9, 2014

I have suffered from this for many years, well prior to a name being applied to it. Perhaps injury triggered this response. It is more than muscle. It is where the muscles and tendons attach. I also find pain with bedding and clothing touching it. ( a different issue). So perhaps early issues with trauma triggered this. Nothing really helps. I was put on various medications which befuddled me, and did not decrease the discomfort. Early issues of crushed muscles, paralysis, polio, concussion. Yet though these occurred earlier, my pain issues of fibro hit a year before puberty. I have worked years with pain, not sleeping well, extreme discomfort. I can remember exactly two days without pain. One of those days I had taken a large dose of steroid for a test,and many years later I just woke up without pain. Right now I feel like I have a really bad sunburn, and that my skin is being cut.

I do not take anything for this. Massage helps, but only when I can tolerate someone touching me. So judge what you may, as this illness can drive one to act crazy. Please, if you want my empathy for your broken leg, or other issues, do not belittle what I have to live though.

pavanneh · Apr 9, 2014

I was diagnosed with Fibromyalgia and Chronic Pain in 1993. It was just beginning to be talked about. I had every pressure point and my inflammatory markers were elevated. I couldn't be hugged by my husband or my children. I would cry lying in bed because the mattress hurt so much. I put a mattress pad and tried many other types of padding on the bed and it still hurt. I was in the Navy so I couldn't just quit. I kept going. I did my job. Stood on my feet for 16-18 hours a day and sobbed on the way home because I hurt so much. But, I was determined to finish and not let it get to me. The last two years I have to admit were the worst and I barely made it to retirement, but I did. All with people making fun of me and telling me that I was faking it. Because if I had Fibromyalgia I wouldn't be able to work or do the physical fitness program that was required. I did it because I was determined to do it. I have been tested for MS, RA and other diseases that Fibromyalgia mimics, but nothing is positive, thank goodness. Because as bad as fibro is, there are worse diseases. I have had people tell me it is all in my head and prescribe medications that drove me literally crazy. I use cognitive behavior and bio-feedback to control the pain. I refuse to use alcohol, or drugs to control the pain as it will do nothing but make my problems worse by making me dependent on a drug. Whether it is a catch all phrase or not, the pain is real. Whether it is psychological or not, it is real pain. And it is exhausting and depressing and frustrating. And there have been times I have just sat down and said I am never getting up again. And I did it anyway. The condition is real and people can go crazy from the pain. Not just the physical pain, but from the emotional pain of having people constantly doubt you and accuse you of being crazy, lazy and looking for excuses for everything. I was a Cardiovascular technician in the Navy when it started. It started with me losing sensation in my fingers when I was scrubbing at the table. I had to quit doing that, and boy did I get dirty looks and accusations over that. It was stupid. It was a job that I loved. Then I couldn't do echo cardiograms anymore because the numbness and pain I would get in my hands. Another job I loved to do and can't do anymore. I was tested for Carpal Tunnel and MS at that time and was not positive for either. Then I couldn't stand in the Cath Lab with my lead on anymore. So I couldn't work the Cath lab all the time. I still had duty and worked once or twice a week, but couldn't work it full time. A post-navy career out the window. When I got out of the military I worked as Respiratory Therapist. I did that for almost 5 years and then I just couldn't do the job anymore. I couldn't work the floor all those hours and I couldn't even ambu someone properly due to the pain in my hands. I had to be let go from my job due to fatigue and the depression from the pain. The medications were not helping, they were making me fatigued, confused and very irritable. We tried several different kinds and none of them helped. They made it worse. I saying all of this because I want you to understand that it is a debilitating illness. Some people can tolerate the pain. Some people can work through it. Others cannot. It messes with your head with brain fog and fatigue mentally and physically. You get so frustrated because there is so much you want to do and it is like walking through fire sometimes to even do the simplest tasks. That can make you crazy, dependent on others and comfort seeking. I also know there are people that use it as an excuse and maybe even self-diagnosed themselves, I was clinically diagnosed, and that some doctor's use it when they are being too lazy to find out the real reason. I just hope that someday someone can find out what this is and what causes it and then we can get rid of it.

I have found cutting down on Carbohydrates especially Gluten, has helped.

lindajean · Apr 9, 2014

I am a Registered Nurse and I was diagnosed with FMS 14 years ago. I was like Emergent and many other health care professionals who believed that patients with FMS were just a bunch of whiney women. I suffered for at least twenty years with a variety of non-specific symptoms before I was diagnosed. I saw many doctors in that time, took a boatload of meds, but no one was ever able to give me a diagnosis and because my symptoms waxed and waned, most of what I took seemed to help for awhile and then, it didn't. I've spent many anxious hours pondering the possibility of an occult malignancy, because, anxiety can be part of FMS and I was legitimately having pain. And yes, to whomever commented on a patient who was having excruciating pain while her blood pressure was being taken, having your blood pressure taken if you have FMS is extremely and almost unbearably painful. I have also been diagnosed, with Polymyalgia Rheumatica, another auto-immune disease that you can't see from the outside. I recently retired from a thirty-eight year career. Until the last few years, I kept my FMS a secret because I couldn't deal with the thought of being judged by my peers and I know I would have been, because I heard the comments they made when FMS patients were admitted. I hope that those among you who are still doubters will look up the research being done on FMS. There are markers that have found on the brain scans of FMS sufferers. It is a legitimate disease and it can be proven. My prayer is that someday there will be a cure for this painful illness and until then I hope that health care professionals will treat FMS patients with the dignity, compassion and respect they deserve.

Indus · Apr 9, 2014

I have Fibromyalgia. It was diagnosed over 12 years ago. I have not missed one day of work from it. Have been a nurse for almost 43 years.

Studies have been documented that what Fibro patients feel, in regard to pain, is real. Recent studies include how the brain processes pain signals, and also skin reception to pain.

I have had the tender spots all over, and have had them for over 35 years, and my docs never knew what they were. My husband says they feel like little rounded up tootsie rolls to him. I just lived with them. They don't bother me unless they're pushed on. I have pains and aches all over, they come and go, some last longer than others. They're never severe enough for me to need any kind of medications. I have lots of symptoms that make up the Fibro syndrome, some for over 30-35 years....never knew what it all meant till diagnosed...IBS, sleeping issues, mild intermittent depression, minor balance issues, itchy skin/unexplained small rash areas, etc. When I got diagnosed with my sleep apnea, the sleep study (the part where your head is hooked up to the electrodes to monitor your sleep cycles) showed how my sleep cycles are all reversed....cycles that should be longer are short, and vice versa....So I had sleep apnea and another issue going on .....

I believe it's real... It's hard sometimes not to judge. Why do I not feel as bad as others with FM do? When I was first diagnosed, I was working with a girl younger than me, who I saw doing stretching exercises throughout the day. I asked her why, and she said she had Fibro. She said she woke up every day at 4:30am to get to the gym before work. She said that people with Fibro have to move, and keep moving!! She said if you stop being active, it's the worse thing for Fibro...and I believe her to be correct.

So I try to keep active. I treat symptoms that bother me (i.e. IBS) with OTC's as needed. I know my body, and know what things cause it to 'flare up'. An exhausting day at work makes me ache all over. I make sure I get enough rest, and the next morning I feel much better....I had docs that didn't want to put me on meds right away, and I decided I didn't want to take more meds, as I'm on meds for degenerative arthritis (all over), and other health issues. I guess I've been lucky, and lived with it so long, I just deal with it, and try not to make it take over my life.

valentine519 · Apr 9, 2014

I was a teacher for 10 years and having fibro and CFS makes me want to become a nurse. Those of you that are nurses, do you think I will survive nursing school? When I have 1-2 very busy days in a row or am very very stressed, I crash! So am I delusional in thinking that I could actually handle it?

chillnurse, BSN, RN, NP · Apr 9, 2014

it seems as if much of it is caused by poor lifestyle habits. Smoking, high sugar and fat foods, no exercise, poor ability to cope, etc. I am sure this is not true 100% of the time, but I have seen hundreds of patients with it, and many of them seem to have somewhat similar circumstances.

But there are also many that do not fit this. I believe the pain is real and feel for these people. We can't let the notion of pain seekers cloud the fact there are people that do hurt.

I believe it is a psychological/neurological response to pain that is altered for some reason. Anything more than that it seems the literature cannot explain, so of course I can't either. Also seems to have some endocrine and immunology involved. I would go out on a limb and say each case is different, hence why they are all thrown into the bandwagon broad definition of fibromyalgia.