What do you think of fibromyalgia?

kittykittykitty · Apr 9, 2014

TO ALL OF YOU WITH A NEGATIVE ATTITUDE ABOUT FIBROMYALGIA

If you had, it you would know it is real.

If you read the research, you would know it is real.

It is not a psychological "problem" but is a neurological disorder.

Blessings to those who have it. Hopefully the nay sayers will develop compassion and be less judgmental.

Over-the-hill-Nurse · Apr 9, 2014

I also am a Fibromyalgia sufferer. My problems with pain started in 1975 after the birth of my 3rd child. I went years before actually being diagnosed with Fibromylagia. By the time they actually gave me a name for it, I was relieved. I do think that sometimes it is a catch all diagnosis simply because I suffer from a autoimmune illness, am a diabetic, have IBS, Lupus, and Heart issues. All of which was clinically diagnosed and all having been diagnosed in different years.

I worked as a RN for 22 years and pushed through the majority of it. The fatigue, and brain fog started taking a lot of energy to over come and I had to go to part time. For 19 years I have suffered on a daily basis with pain. Some days worse than others. I also do not rely on pain medications any more than I have too. Insomnia is a big issue as I try to go to sleep with my body screaming with pain.. believe me it is no easy task. This also increases the fatigue as getting 8 hours of sleep a night is a joke. On average I gain 4 hours and if I am lucky, 5.

As the years passed, it has been harder and harder to keep control. Exercise is important to keep some of the pain at bay. Water exercise seems to work the best because you are not working against resistance. I was 19 when this all started and I am now 58. I do not and have not ever had issues with depression nor do I take any medications for it. I do however take Lyrica and also Plaquenil which has helped the most in controlling pain. Not that I don't take a handful of other pills for HTN, DB, and for my heart. I see a Rheumatogist to control my many issues with Fibro.

I also had been through the ER visits, the eye rolling every time I went to the ER, the doctor's telling me I needed to maybe seek out a psych doctor as they could not find anything causing my pain and a host of other comments through out the years. I personally feel that the labeling of maybe it's in your head can in itself make a person feel attacked, feel devalued, feel anger, feel the insensitivity of others, and push someone into depression because no one believes you. Having said that, I don't think anyone means to be hurtful in their beliefs and opinions. Pain is very personal for everyone and how people deal with it also is very personal.

As a nurse, I try to be very open minded when it comes to pain levels as I cannot live in their bodies and know that they are not having pain. As nurses, we need to encourage ways to help relieve that pain they are having and try our best to help them learn how to do that. Every day activities actually trigger the brain to react. Just a simple act of eating something spicy triggers the sweat response in people which in turn the brain on to react and triggers chemicals to respond to the stimulus. When those receptors are somehow switched to a negative response, the body does not respond as it should. Pain receptors are kind of like the same thing. Pain is very real and whether there is a actual name for it or not, it doesn't stop the pain from happening.

Fibromylagia people learn to adapt and try to re-adjust their responses be it rest, pain meds, exercise, etc... until we know more about why and what, it would be nice not to be labeled or made to feel like we are all put on the back burner and not taken seriously. I commend those of you that have made great strides in figuring out how to manage your own fibromylagia pain.

Esme12, ASN, BSN, RN · Apr 10, 2014

While I believe the "term" has been over used, just like ADD ADHD....it is very real.

Auto-immune disorders are elusive and controversial most of the time. Many practitioners if they can't find the answer the patient is crazy, needy, demanding. They place the frustration on the patient. Few MD's actually LISTEN to the patient and without a $12,000 MRI they can't diagnose themselves out of a paper bag.

For those who don't think certain diagnosis are "real" I pray you never find yourself on the other side of the stretcher. I spent over 13 years looking for a diagnosis for vague symptoms, weakness, unsteady gait and a multitude of other things. In my repertoire of physicians and stacks of records including psychiatry. I have been diagnosed with MS, ALS, Myasthenia Gravis, carpal tunnel syndrome, CIPD (Chronic Inflammatory Demyelinating Polyradiculoneuropathy) and a multitude of others.

It wasn't until my disease had progressed in severity and has caused severe damage did the MD's at premier medical facilities had their Ah Ha moment with typical CLASSIC presentation I had for years. FOR YEARS! I have an inflammatory progressive auto-immune myopathy. Dermatomyositis/polymyositis. It affects 3.2 people per million. My immune system attacks my muscles and skin. I have Cushings from high dose steroids and the new buzz word today was Lupus and MCTD (multiple connective tissue disorder). I look like Jabba the hut with a sunburn.....with dark glasses, a wide brimmed hat....covered in clothes to protect me from the sunlight. Hell even florescent lights hurt my skin.

You know what they said after actually calling me a crock...for years? I'm so sorry. That's it. Sorry. REALLY? That is ALL you have to say to ME????? Believe me..... I had a whole lot more to say in return.

So the next time you have thoughts about the validity of a patients symptoms think of me . Remember that it can happen to any one of us at any time and steal away your life in a moments notice. It has nothing what so ever to do with.... poor lifestyle habits. Smoking, high sugar and fat foods, no exercise, poor ability to cope, etc. Be kind to them. There have been so many gum smacking young medical person with the typical eye roll and the whispers that patients can hear and disrespectful comments that makes me want to slap them...for I do look like a side show freak. My patience runs thin some days when fatigue and pain take over so there may be times I am less than patient with others. Take into consideration that the battle being fought is a long one and daily.

Remember. There but for the grace of God go I.

kittykittykitty · Apr 10, 2014

I hear you loud and clear. So sorry it happened to such a lovely person.

cinlou, BSN, MSN, RN · Apr 10, 2014

Wonderful conversation. There have been many points to ponder here which is what makes a good interaction with peers. We all know that fatigue can cause us to be irritable. Chronic pain causes fatigue, so we have a vicious cycle here.

The comparison between different diseases that have been used over the years as catch all's and then finally proven is something to think about. ADD, ADHD was over used and kids were over medicated, some did better with behavior modification therapy, so again the mind body connection.

Years ago we used to use a great deal of guided imagery for pain management. When I worked in the burn unit we used this and we did not have to give patients nearly as much pain medication as is used now, we have lost that patient centered connection, even though now we keep hearing about the fact that we have to become patient centered. We used to be.

I think those who spoke about relaxation therapy whether yoga or something else have points, also when you think or listen to anyone with arthritis we know we have to move through the pain because if not we won't be able to move and the pain will worsen.

I am a 36 year nurse in ER, critical care and a bunch more, nurses cervical injury C5 discectomy and fusion, always carried my stress in my shoulders so when I was getting more muscle spasms in my left shoulder blade area, I thought ok I am going to break down and try a chiropractor I was always afraid at the thought of having someone mess with my neck but I let them do it, and my hands went numb, came right back but I thought this is not good, had an MRI and found herniated disc. Docs said it was a typical injury for "older" nurses. So had it fixed, have had carpal tunnel surgery, ACL repair, blah blah, So I said I can't keep doing this to my body, after 3, 12 hour shifts I would drive home leaning forward practically in tears with the upper back, shoulder pain. I turned to education thinking I'll do better, and I have but the pain has worsened in my upper back, I continue to go to a chiropractor for my upper back, but I lie in bed and even my hips will get painful, kind of a deep pain. I like many of you thought fibro is catch all, then I started reading about it and seeing the new research out there on it. I don't know that I have it, but I certainly question it. I fit all the pressure points. narcotics do not work, I use robaxin helps a bit. Can't take NSAIDS orally and I yet I know this would be the best help, so you just do what many do, find your center and live life the best you can, some days are better than others.

Working in the ER for so many years I saw all the patients you all speak of, but even those with psychological issues have pain, it may not be the pain each of us thinks of, but it is their pain. So again we must trust that when they say they have pain they do, opiates may not be the answer for their pain, but they think it is, placebo affect.

Physicians are not well known for their knowledge on pain management and the type of medications that are the best for different kinds of pain.

Fibro is what it is, and whether it is a catch all or not there are always the outliers just like in any research study. The affects of chronic pain leads to many additional issues, such as what has been discussed here.

Keep having these civil conversations and we will learn so much from each other and maybe we will break many misconceptions.

"Go forth and concur"

redhotzz · Apr 10, 2014

Sorta like us WOMEN who got pegged as nutty or druggies when we had HORMONAL MIGRAINES every moknth...with PVCs. Once I got pregnent, at age 39, never had them again. Now, all kinds of treatments for migraines.Lucky for me, I stopped being the medical guinea pig for every Neurologis, Internist, OB-Gyn after I was put on Ludiomil at work and started to see the wallpaper drip! It was a cousin to LDS used for migriines in 1980. I feel for people who have ANY disease with few symptoms...RDS, chronic pain, fibromyalgia...because they get treated differently...SMH.

Emergent, RN · Apr 10, 2014

Last year, my chronic shoulder, neck stiffness turned into a exquisitely painful pinched nerve in my R shoulder. I was in horrible pain. Before that, I had figured that this chronic stiffness was just a part of getting older.

I couldn't live with the pinched nerve, so got to a chiropractor. He worked on me, and prescribed exercises. He said my shoulders were rolled in and I needed to pull my chest apart and realign everything. I also sought a massage therapist who works in a PT clinic. He also gave me very helpful exercises, and taught me so much about proper body dynamics and alignment.

I stuck with it and now, about a year later, I'm 100% pain free and all that neck and shoulder pain is gone.

Our way of living is unnatural. We spend hours in cars, using computer mice, slouching on couches, etc and so forth. It has a cumulative effect over the years. It has a ripple effect throughout our bodies. Add to that the chemicals we are bombarded with from our environment and our poor eating habits, and the stress of our modern pace of life, and that spells trouble for our bodies and minds.

morte, LPN, LVN · Apr 10, 2014

gluten is a protein. lPease! if cutting down seems to help, CUT IT OUT, entirely! that is the only way to see if that truly the problem. and all of you with the diagnosis of IBS, please consider celiac or nonceliac gluten intolerance.

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.

FranEMTnurse, CNA, LPN, EMT-I · Apr 10, 2014

I have it and I'm not neurotic. It is a very real neurological condition. I have done a lot of study on it. My legs, arms and torso are very painful if these areas are pressed. I just wish I didn't have it, and I don't have any idea how I got it. None of my other family members has it. :confused:

kakamegamama · Apr 10, 2014

My eldest daughter has fibromyalgia. Believe me, it is not in her head. I have seen her unable to move without pain, suffering from lack of sleep, and migraines that last for days (migraines often go along with fibro). She has a few years "wiped" from her memory due to the pain killers she was on, pain killers that worked for maybe 3 months, bringing sweet relief, only to stop working. She finally chose to get off the meds and suffer with the pain until she determined that for her, the triggers for fibro pain were related to certain foods. When she eliminated those, the pain lessened or went away. In some of the earlier tests, antidepressants were thought to bring relief to the fibro sufferer, thus many are on them. It is very easy for poly-pharmacy to happen with this syndrome/disease. It is real to the person who suffers from it. It is also a family disease in that the whole family is impacted. It is not a psycho-somatic illness, but as real as cancer, as heart disease, diabetes, you name it.

Unless you have walked a mile in the shoes of someone who suffers from fibro, you have no clue.....

kakamegamama · Apr 10, 2014

" My question was geared to the responders with fibro -- what have you found helpful (or not!) when it comes to alternative treatments?"

Edmia---my daughter has found that when she limits milk products and beef her fibro is less likely to occur. Or, if she does have either, to limit the quantity.

hotwaterbottle · Apr 10, 2014

LTCNS, I don't blame you for being defensive, after obnoxious comments by Emergent and The Commuter.