What do you think of fibromyalgia?

blondy2061h, MSN, RN · Apr 12, 2014

Over 20 plus years I have found a vegan diet (that means NO dairy, eggs or other animal products), NO gluten, no peanut, no sugar or artificial sweeteners, no nightshades, NO MSG, no artificial anything and very low sodium helps me.

What do you eat?

When all else fails I apply a compounded prescription gel of gabapentin/ amitriptyline/lidocaine 5%/3%/5% to the most painful areas, usually feet.

Is this available commercially? Or something you have compounded?

OCNRN63, RN · Apr 12, 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.

Your story is great for you; I'm glad you found something that worked. But it doesn't give you the right to sit in judgement of people who are suffering. What works for one may not work for another.

Cricket183, BSN, RN · Apr 12, 2014

I know this is going to sound strange but I felt compelled to respond anyway. I'm not sure what I believe about fibromyalgia.... Why is this strange? Because I was diagnosed with it many years ago. I have a complicated medical history. I was diagnosed with RSD/CRPS in Nov. 2006. It initially started in my neck, right arm & shoulder after a ruptured disc @ C4/C5 caused permanent damage to the C5 nerve root. I had surgery to correct the issue--Cervical Discectomy with fusion--but the damage was already done. Initially I continued to work as a RN on a very busy inpatient oncology unit, but eventually it got to be too much. In March 2008, I was forced to go on disability when the RSD spread to my entire upper body and began affecting my heart (tachycardia & SVT) and stomach (gastroparesis). Shortly afterwards I was referred to a rheumatologist when I started having symptoms that could not be explained by the RSD alone. To make a long story short, after extensive testing I was diagnosed with Palindromic Rheumatism, Sjögren's Syndrome & fibromyalgia. I have always questioned the fibro diagnosis despite having many of the symptoms (wide-spread muscle pain & spasms, extreme fatigue, difficulty sleeping, and 14/18 positive tender points). Maybe it's just denial on my part because of the negative stigma fibro has associated with it. Or perhaps because there is no definitive test that "proves" I have it. (For example, with Sjögren's Syndrome my blood work was positive for the antibodies and diagnosis was confirmed by a lip biopsy.) I'm not saying that fibromyalgia does not exist. I'm just not sure I have it. Like others have said, I do believe some physicians use it as a catch-all diagnosis.

cinlou, BSN, MSN, RN · Apr 12, 2014

Your story is great for you; I'm glad you found something that worked. But it doesn't give you the right to sit in judgement of people who are suffering. What works for one may not work for another.

I must have missed something you read from emergent because I did not see anything in what you reposted as their quote that was judgmental I only saw that persons experience. And then Emergent expressed how we live unnaturally.

This has been a very good conversation and it is easy to be very sensitive about each others comments, because we all have our experiences, and we all know how we feel. You are absolutely right when you say that what works for one may not work for the other. This is something we all as nurses work very hard at in treating each of our patients as an individual, and I think we all fight to not interject our opinions onto our patients.

These forums allow us to finally be able to speak on a peer level and vent thoughts, feelings, ideas, research etc. to each other. What an awesome way to connect with so many diverse people and experiences.

Emergent, RN · Apr 12, 2014

I must have missed something you read from emergent because I did not see anything in what you reposted as their quote that was judgmental I only saw that persons experience. And then Emergent expressed how we live unnaturally.
This has been a very good conversation and it is easy to be very sensitive about each others comments, because we all have our experiences, and we all know how we feel. You are absolutely right when you say that what works for one may not work for the other. This is something we all as nurses work very hard at in treating each of our patients as an individual, and I think we all fight to not interject our opinions onto our patients.
These forums allow us to finally be able to speak on a peer level and vent thoughts, feelings, ideas, research etc. to each other. What an awesome way to connect with so many diverse people and experiences.

Right, I was merely sharing an experience I had, not diagnosing anyone else. I was thankful for the health professionals who were able to lead me back to health.

Esme12, ASN, BSN, RN · Apr 12, 2014

What do you eat?
Is this available commercially? Or something you have compounded?

she said in her post...compounded...

Quote from kittykittykitty
When all else fails I apply a compounded prescription gel of gabapentin/ amitriptyline/lidocaine 5%/3%/5% to the most painful areas, usually feet.

FranEMTnurse, CNA, LPN, EMT-I · Apr 12, 2014

Apr 5 by Emergent

What do my colleagues here think of fibromyalgia? It's sufferers seem to mainly women. I'm very skeptical about it. Is it a psychological disorder? I don't mean to dis anyone here, please forgive me, but every patient I've ever taken care of with this disorder strikes me as neurotic. Since there is no actual lab test the definitively confirms the diagnosis, I remain suspicious regarding this disorder.

What do you know about this condition?

If you had this condition you would be more merciful with your comment. Thankfully, you don't have it, or you would understand.

roser13, ASN, RN · Apr 12, 2014

Apr 5 by Emergent
What do my colleagues here think of fibromyalgia? It's sufferers seem to mainly women. I'm very skeptical about it. Is it a psychological disorder? I don't mean to dis anyone here, please forgive me, but every patient I've ever taken care of with this disorder strikes me as neurotic. Since there is no actual lab test the definitively confirms the diagnosis, I remain suspicious regarding this disorder.
What do you know about this condition?
If you had this condition you would be more merciful with your comment. Thankfully, you don't have it, or you would understand.

I think it goes without saying that any one of us has a greater understanding of any condition or situation that we ourselves have experienced. OP is simply noting what her own experience with fibro patients has been. Certainly, anyone afflicted with fibro "gets" that the negative impressions are out there. The most effective responses to this post (by far) have been fibro patients who have taken advantage of this opportunity to explain their disease process and symptoms to the rest of us. It has been very productive and informative.

Emergent, RN · Apr 12, 2014

It's annoying when, a thread is 11 pages old, a whole interesting discussion has occurred. Then someone pops in and attacks the original post, without bothering to catch up on where the discussion has gone.

If you want to have open, productive discourse, then read the first 3 or 4 pages of this thread and see how it's done. I've been very impressed by most of the discussion here. Try to emulate the folks that made this conversation interesting and enlightening.

Don't just call people ignorant fools who ask a question, ask for opinions, give their own perspective. Try, instead, to bring some valuable information to the table, like so many have here. Going for the scathing slam dunk doesn't foster understanding or build bridges.

redmielita · Apr 12, 2014

I have it, and I can assure you, for being a "fake" disease, it hurts awfully darn bad! That said...I find it difficult to participate in online support groups for fibro because there is just SO much complaining and not a lot of interest in what to do to get better/improve the symptoms. I do realize that a lot of it is venting, but it gets incredibly old and it isn't an approach I feel is productive.

The absolute best advice I got for dealing with it was from my old GP who first diagnosed me. He told me that I MUST keep moving at all costs, that if I didn't keep moving I would lose the ability to do so. I have followed that advice, and seeing what happens to other sufferers who don't has proved him right in spades. After a lot of trial and error, the meds that work for me are a low dose of nortriptylin combined with doses of tramadol as needed. Heavy-duty narcotics do nothing for fibro pain, at least for me. I wind up dopey, sick to my stomach....and still hurting! The nortriptylin has been a godsend. I still hurt, but it's nothing unbearable, and I'm back to doing a lot of the things I used to do.

So, long story short- yes, it does exist. However, I do understand where medical professionals get the idea of the stereotype, given the way that many sufferers conduct themselves. I completely get that being in pain all the time does absolutely nothing for your temperament- believe me, I do!- but there comes a time when you've got to buckle down and decide to do everything you possibly can to better your situation, and it seems like there are a lot of sufferers out there who just want a magic pill to fix things for them.

cinlou, BSN, MSN, RN · Apr 12, 2014

redmielita, thank you. You said it so very plane and simple.

Unfortunately I think it is the overall attitude of the country. So many want a quick fix given to them. The so called entitlement generation that actually covers people from all the generations.

Those who hang tough no matter their problem, and search for the true answers and get the information out, like many of you have here, you are the educators. Thank you

redhotzz · May 12, 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.

SMART lady, you are! I injured my lower back at an early age (24) slipped while cleaning a shower and herniated the L4-L5 and into S1 discs. Instead of running to surgery, my Chiropractor/Ortho MD hospitalized me for 8 weeks, in 35# of pelvic traction and kept me 'snockered' on pain meds and tranquilizers the whole time. ALL discs 'relaxed' and slipped back into place. I then went to PT for 3 weeks to a 'save your back clinic' specially for nurses/doctors and learned how to build my core, how to do the right exercises for lower back and what to do immediately, should I feel any 'twinges' of lower back pain again in the future. That was in 1976.

In 2010, I finally blew out L1-L2 and was MIS-diagnosed by one ER doctor and then a clinic PA, so that I ended up with cauda equina syndrome on top of the herniation and by the time I got to a Chiropractor who would see me without any health insurance (2 months of constant pain) he took one xray and sent me to the Emergency Ortho Clinic and I was told IF I didn't have emergent surgery I would be in a wheelchair the rest of my life. I feel lucky that the Microdiskectomy helped me walk 100% again and I again have feeling in my pubic area and right thigh. Because of the time lapse involved, I do have residual burning pain most of the time, but I walk 3-4 miles/daily and when things get too painful, I see the Chiropractor who, in a few visits, can get the searing pain to let up some. I rarely take anything for the pain.

Before I would allow any neck or back surgery to be done on me, ESP if young and in a medical career, I'd try Chiropractic 1st for a month to see if they can help. I bought 30 YEARS, before my old back had to be chopped on, and only then because of which discs were involved PLUS the bladder involvement. Old L4,L5 &S1...they still support me!

Hardest thing about ALL of it is learning to WAIT until you have adequate lifting help...esp in the ER. We stay busy, we work short-staffed LOTS, and we are harder-headed and think, "just this once" or use a sheet, etc to assist us...please get good help and save your necks & backs!