I have recently been diagnosed with Fibromyalgia Syndrome. I know a lot of you are very judgemental about FMS, but hear me out. I have suffered for at least the last 7 years from chronic pain and exhaustion (and worked more than full time as a CNA). I have been to countless doctors, none of whom (until now) could find anything wrong with me (according to labs/x-ray's etc...).
For the past several years I have been treated by nurses and doctors as a drug seeker, and an attention whore. I know the pain of being ignored by you (you know who you are), because you don't think I look like anything is wrong with me...
See, I am only 25 years old. Do you know how hard it is to get someone to believe that you are in pain when you are 17 to 25 years old?
I just want the judgemental nurses out there to know that this pain is VERY real. This job is not easy on our bodies, and someone with FMS takes a double hit...
So please think twice before you judge another persons pain. :)
The expert on pain is the patient! I do get angry at health professionals when they doubt anyone who has pain issues. Pain control is a hot issue these days & I know of some LTC facilities who have been cited for poor pain control. I too have fibromyalgia & I have the good & bad days, plus I have DJD & DDD & had a spinal fusion done in 2005. I pity anyone who doubts me when I express any discomfort, I speak out very loudly & clearly about it!
Specializes in L&D, GYN, Neo ICU, Nursing Education.
:redpinkhe Drumwidows post of May 18 does a great job of telling readers about the frustrations and the notions of others about living with fibro and the accompanying junk that follows us around. I've read all of the posts with interest because of my own fibro issues. It is my hope that nurses and others without fibro or an autoimmune disease read these and get an idea about the truth of our condition and how we live day to day.
As fibro folks wouldn't you just love to have a hug that isn't painful? Hugs encompass several of our trigger points.
I fly to Virginia Thursday. Going to help my daughter-in-law with the grandbabies for a while. My help is mostly the loving the girls kind. One thing I hate about flying is that I have to use a wheelchair going from gate to gate. I hate it because I'm out of control, because I know others look at me and I look normal, and because I'm obese and I imagine others look at me and think that is the reason I'm in the wheelchair.
I am fortunate to have a husband who is supportive. I have friends who have divorced or who live with nonsupportive spouses.
Thanks to all for posting and sharing your stories and thoughts.
Specializes in NICU, Newborn Nursery, Pediatrics, CM.
The expert on pain is the patient! I do get angry at health professionals when they doubt anyone who has pain issues. Pain control is a hot issue these days & I know of some LTC facilities who have been cited for poor pain control. I too have fibromyalgia & I have the good & bad days, plus I have DJD & DDD & had a spinal fusion done in 2005. I pity anyone who doubts me when I express any discomfort, I speak out very loudly & clearly about it!
Thanks,
Jerenemarie
Thank you, Jerenemarie! They make such a big deal in the hospitals about pain management, documentation, relief, etc. Yet we have been dealing with Fibro for so many years that we know our bodies better than anyone, but when we say we are in pain and only certain meds work for us, we turn into "drug seekers" and they don't want to give us anything. I have had good luck recently with Darvocet. Yet, I told my PCP that I needed a refill and they said they would call it in and never did and didn't return my calls. Time for a new PCP, but then you go through the looks and the disbelief AGAIN with a new doctor. What a pain. I think I may just stick with what I have this time and be a LOT more vocal! I am also going to print out some of the wonderful articles that have been posted here and take them with me. I guess it is time for me to do some education for them!!
Working is still hard, but I will continue until I can't take the pain anymore. It takes me all the days off that I have to recover so that I can go back and do it all over again. Even one of my good friends has begun to give me the "if you would just lose weight you would feel better" speech. Don't people realize that it is the fibro process that got us to be overweight in the first place? The pain and overwhelming tiredness that comes with it is just not understood. I wish those that don't believe in the diagnosis could experience what we feel on a daily basis. Then and only then, will we be able to get the help we deserve!
:redbeathe By the way, I recently read a research report that stated people with real and chronic pain lose the capability to become addicted to narcotics because their bodies need the relief. Can't remember where I read it. If anyone out there has heard of this I would love to hear more about it. I'm sure the skeptics would disagree 100 per cent but it does make some sense to me. What goes on in our bodies at the cellular level is nothing less than amazing.
I have read about this phenomenon on a site about adhesive arachnoiditis. Moreover, my board-certified pain management specialist has also spoken to me about it. This idea is starting to take root, just as the idea that nerve pain does in fact respond to narcotics, but requires higher doses than physicians used to be comfortable prescribing became credible several years ago.
If anyone here wants a terrific article to use to explain and defend long-term narcotic medication therapy, here's a link to one from the New England Journal of Medicine. The piece itself is excellent and it also references many other articles and studies that are very informative. I found it through the American Pain Foundation's website: www.painfoundation.org
A Hospice RN once told me to compare giving pain meds to the old "pac-man" game...the pain meds are "eating up" the pain receptors, thus relieving the pain. Not sure if this makes sense but I didn't know how else to put this in print in the way she told me! I have the utmost respect for Hospice nurses & their knowledge on pain issues, they are awesome!
I just wanted to say thanks for starting this thread and all the replies! I have been dx with fibro for about 7 years now, but take no daily medications for it. I thankfully don't have TOO much fatigue, and volunteer for my parents business in 12 hr shifts three days a week. I KNOW I can do this but it's nice to hear others who are doing it every day say so.
I had problems with Lyrica, Cymbalta, and gabapentin so my PCP prescribed Savella last year and I've taken myself off of it twice, both times because of the side effects. My hands and feet swell (+2 pitting edema somedays), I have horrible facial flushing, have been depressed, and my blood pressure went up. Incredibly I let my practitioner talk me into trying it again when I went off it the first time. ARGH! I'm off of it for good now, not taking anything. I am very tired and have a lot of back pain but it is better than sweating and flushing, heart racing, and BP going up.
I have been off of it for maybe a month now and the side effects are diminishing. I was so ticked that I filled out an adverse effects report to the FDA. Why is this stuff on the US market?
i was injured at work which triggered the FM to begin, and MD (rheum) is starting to try meds to get it under control so i can get back on the floor. (so far not doing pt care- but without the right meds i'm afraid i'll have to leave). but what are the ethical issues about taking lyrica/ultram and other narcotics while working?
i was injured at work which triggered the FM to begin, and MD (rheum) is starting to try meds to get it under control so i can get back on the floor. (so far not doing pt care- but without the right meds i'm afraid i'll have to leave). but what are the ethical issues about taking lyrica/ultram and other narcotics while working?
Neither Lyrica or Ultram are narcotics...both do have side effects, which need to be watched for. My experience with Lyrica is to start out with the lowest dose possible, see how it effects you.....Even with the right meds, floor nursing may no longer be an option, if you can't control the symptoms of FM....
Specializes in Medical and general practice now LTC.
Guys Can I please remind you that here on allnurses.com we do not offer any medical advice. This is part of the terms of service you all agreed to when you joined the site
Couple of posts either removed or edited to comply with the terms of service
I feel your pain, literally. I too have FMS and was diagnosed at 18. I am only 27 and now work as an ICU nurse. I often listen to the horrible comments nurses make about patients that come in with fibro knowing that I work harder then most of these nurses and suffer quietly. A few know I have herniated discs in my neck and back and then want to act like I'm fragile which I find annoying. I knew I had this condition coming into nursing and do not want sympathy. Understanding would be nice, of course but for the most part I just don't want to hear the negative remarks about fibro patients because people have no idea how hard it is. If you ever want someone to talk to let me know and we can exchange emails or something. I just joined a FMS support group. Didn't think it was my thing but I was surprised at how helpful it can be.
Specializes in L&D, GYN, Neo ICU, Nursing Education.
I fell at work in April, 1997. A simple fall and simple subsequent surgery. I ended up with sacro-iliac dysfunction and fibromyalgia and chronic fatigue. I haven't been able to work since that day. I miss it every day because I loved it so much. One of the most difficult aspects of my journey has been (1--finding a diagnosis, (2--finding the right meds for me. (3--dealing with the depression and (4--losing the ability to do everything I used to take for granted.
I've had many doctors, nurses, and others tell me I'm crazy, that I should just suck it up, that they can't figure this out,and some thinking I'm making excuses.
I believe, and always have believed, that if a patient tells a nurse or doctor that he or she is in pain they should listen and not judge.
Fibromyalgia is a real condition. It isn't diagnosed with an x-ray or labs. It is process of elimination. I explain sometimes by telling others that an excellent day for me would be to have a pain level of six. People who live without pain can relate to the pain scale. I've had some tell me that if their pain level was that high they would call in from work and be in bed.
To others with Fibro I say have a great day. To nurses, listen to your patients. Believe in Fibro, it's real and treat your patients and colleagues with Fibro with respect.
They make such a big deal in the hospitals about pain management, documentation, relief, etc. Yet we have been dealing with Fibro for so many years that we know our bodies better than anyone, but when we say we are in pain and only certain meds work for us, we turn into "drug seekers" and they don't want to give us anything. I have had good luck recently with Darvocet. Yet, I told my PCP that I needed a refill and they said they would call it in and never did and didn't return my calls. Time for a new PCP, but then you go through the looks and the disbelief AGAIN with a new doctor. What a pain. I think I may just stick with what I have this time and be a LOT more vocal! I am also going to print out some of the wonderful articles that have been posted here and take them with me. I guess it is time for me to do some education for them!!
jerenemarie
76 Posts
The expert on pain is the patient! I do get angry at health professionals when they doubt anyone who has pain issues. Pain control is a hot issue these days & I know of some LTC facilities who have been cited for poor pain control. I too have fibromyalgia & I have the good & bad days, plus I have DJD & DDD & had a spinal fusion done in 2005. I pity anyone who doubts me when I express any discomfort, I speak out very loudly & clearly about it!
Thanks,
Jerenemarie