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. :)
You know heogog, while reading your post it dawned on me that my viewpoint of drug seeking people has changed. The times that I have had a legitimate need for "the wrong kind" of med and had to put up with all the bad attitudes, has made me see the light. I now tell doctors straight up why I will not cooperate with any med regime to help my problems when they start talking the wrong kind of script. I was insulted for the last time. Not again while I have any say about it. And FM and CFS both sound like very, very plausible diagnoses to me. I wonder what really is politically correct nowadays? (I think my hypertension is going to kill me).
The most interesting information I've read about FM in the last 6 months was on MedScape.com. A researcher did a number of FMRI's(I think) on people identified with FM vs the control population. He listed a number of changes in the brain of FM'ers
-a change in our gray matter
-changes in the anterior and posterior cingulate
-and something to do with the gyri, I think.
Now then the cingulate areas are in close attachment to the limbic system. The limbic system has a whole lot to do with our pain sensing mechanism, regulation of neurotransmitters(or lack thereof).....underlying the supposition that we simplyu do not have enough dopamine/seratonin receptors.
The other news is that many docs are now subscribing to the notion that for whatever reason, people with FM suffer from a hypersensitivity of pain perception; and that we do indeed suffer from a hyper alert pain notification system, especially the peripheral nervous system.
So, yes, it is all in your head....but it's no longer "crazy lady's disease", it's quantifiable neurological changes within your poor head.
FYI- my dad always accused me of being a real wuss about "things hurting". I have no idea when the FM started, but I do know that it has had a lasting effect on my employability.
When I was married to my ex, his daughter, then 17, came to visit us. She complained of a number of things. I asked a few very pointed questions and then, with her permission, started touching the tender points. She had a lot of the "classical" tender points. I told her that in my considered opinion, she had FM and needed to get an official diagnosis ASAP. She was married to a military guy, she was evaluated at Portsmouth Naval Hospital and it turned out that I was right. She had FM. It's made some serious inroads into her quality of life. When they decided to get pregnant, her pregnancy was so rough that they decided that this was the one and only child they would ever have.
Since my divorce from her dad, I have no idea how well or poorly she is doing. I only hope that she can and will respond to meds such as Lyrica, because she could use a certain amount of control over her life.
It's not that I am tooting my own horn, about my ability to diagnose FM- anyone whose had it long enough and researched just a bit could have done the same. I just wonder how long she had suffered with FM before I was able to check her out. So all of you young 'uns, don't worry about your age. Even us old farts get glared at by the little old ladies when we take that last handicapped space, because of having a flare so bad that walking 100 feet makes your expensively shod feet yell with pain.
Someone once said to me it was like living with an extra person in our body, a constant daily argument that reminds us all that we can either choose to live and carry on despite having that second head or allowing the second head to control your entire life. The former live and carry one as best as possible, the latter develop a chronic pain personality(concentrating on your pain and how it ain't fair to the exclusion of everything else, then being surprised when no one wants to be your friend any more). I know all about the chronic pain personality; I was the embodiment of it for a number of years, til I simply said, well Helga, let's get on with life, let's get out of this pit and get out!
It's still tough to get out. I have a number of medical issues aside from FM, CFIDS and ADD. I have a chronic sinus problem and almost 10 years ago ended up loosing approximately 90% of my colon, so not only do I have the FM mal absorption problem, but oddly enough, no one told me that I would probably spend the rest of my life iwth an electrolyte imbalance, too. What fun!!! As I've weaned off my pain meds, you can imagine how quickly I loose fluids! That's my reality. Today I asked the local grocery store to order two cases of grape Pedialyte for me, which won't last very long, but by Gum I'm tired of the flavors they presently carry!!!!
Enough blather from me- It's late and I'm rambling.
At any rate, FM is such a highly individualized disease that one can only try what worked for others before findoug out what - sorta- works for you.
Specializes in Cath Lab, ICU's, Pediatric Critical Care.
I have been reading all these posts related to FM, I thought I'd add my '2 cents' worth. :twocents:
About 11 years ago, after moving to my current location, I had a very bad respiratory viral illness. I missed 3 weeks of work, had 3 courses of antibiotics. Several months later I started with fatigue, unable to concentrate at work, weight gain, etc. I also had lots of aches and pains. The docs couldn't 'figure it out'. About 5 years ago, after talking to the NP at my docs office, she concluded I had FM, and placed that on my chart. Of course, that didn't make dealing with it any easier. I also have other issues that go with FM: IBS, Sleep apnea (recently diagnosed).
I've been lucky. I've continued to work, though some days I feel like going home and curling up on the couch under a blanket. I have to deal mostly with the Fibro fog, inability to concentrate, fatigue, and of course the pains and aches. I've gained 60 lbs over the last several years because I've been unable to exercise. I now know that having Sleep apnea may have contributed to some of this. Work takes all my energy. My pain has not been near as bad as some of you as I read these post. I have not missed a day of work because of the FM. As someone posted, we all have individual and specific symptoms of FM we deal with, at different levels.
I too hear lots of skepticism related to FM. I try to explain to anyone who may be interested some of the ideas of what causes the symptoms we have. I try very hard at work to stay focused, concentrate, so that I don't create problems for me or my patients. I find however, as I get older, it gets a bit more difficult.
I wish you all the best! Keep posting, these messages serve as a source of comfort and knowledge for us who come here.
I am also diagnosed with Fibromyalgia and RSD. I got hurt while working short and the only RN in the building. I fell and hurt my knee, back and numerous other smaller injuries. Everything healed up but my knee and my back. I finally got to go to a Orthopedic Dr. He actually stated to me that I just have a low tolerance to pain. I yelled back at him that I had 2 kids(at that time) without an epidural and had appendix surgery and was back to work in less than a week. He eventually did surgery to fix the torn cartilage. I ended up having to have knee reconstruction 2 year later because he didn't fix my knee. I have his initial report and in it he said that I have more pain than "normal" and that he didn't think there was anything wrong with me since I was a RN and had gone through previous surgeries on my other knee. He was going to do the MRI though to be sure. I woke up from that surgery KNOWING something was wrong. I was in sooo much pain. It took me 2yr to get the diagnosis of RSD and another 2 for Fibromyalgia. All of the friends that I had that were nurses are no longer in my life. I got a lot of anger from them because there was nothing wrong with me. I have been told by Dr's that there is nothing wrong with me I just don't wasn't to work. I loved my job. I loved my life. I don't even have my nursing lisc anymore because my marriage didn't survive my diagnosis (it wasn't a good marriage to begin with). I had to make a decision to either renew a license that in my gutt I knew I would never use again or feed my kids. I chose to feed my kids. I told you all of this to let you know that I do understand where you are coming from. I have had the same thing. I was first injured when I was 25. I am not 41 and nothing has gotten better. The people who know me know what I go through. Other's look at me and don't see what is wrong. They don't see that my body is screaming in pain all the time. I wish you all the luck and pain free days as possible.
Specializes in Cath Lab, ICU's, Pediatric Critical Care.
Drumwidow,
Wow, you have been through a lot!! I hope life gets better for you, and you find some relief from all the pain. My husband deals with chronic pain all day, and he had to medically retire. After I read some of the posts, like yours, I consider myself lucky!
Please take care and keep us posted as to how your doing.
Another reason why Fibromyalgia patients appear to be 'drug seeking' is because, in a sense......they are! They are people in pain and people in pain want relief.
Why is this so hard to understand for so many people?
FM patients will go to the doctor (or sadly, many Doctors) until someone actually LISTENS and does something to relieve their pain.
I don't understand why a Physician cannot start a patient who expresses pain (and all of the other issues that accompany FM) and start them on a low dose antidepressant AND a low dose opiate. The MD can write a script for 20 or 30 opiates. They can then tell the patient to come back in 30 days and reassess the pain level and see if it is helping. If they are uncomfortable w/ this, refer the patient to pain management.
And it isn't just pain that FM patients suffer from. Many are also dealing with sleep issues, IBS, RLS, bruxism, fatigue-low dose, well-manages opiates can all but eliminate these issues. I've personally witnessed a complete change in a person once started on the correct med/dose.
The USA is so terrified of opiates and I really don't know why. I think only 3-4% of people taking opiates become full-blown addicts. The other 96% of patients are taking their meds as prescribed.
I think opiates are one of the most amazing drugs available.
Thank you for that. It's true. I have gone to the ER for injuries or illness, non related to my fibro issues or RSD (which I have also). I have been told that I am just drug seeking and what do I expect them to do for me? I had an ortho dr tell me the same thing when I was sent there by my pain dr for 2 bulging discs that I had an x-ray & cat scan to prove. He wouldn't help me at all. He just got nasty and walked out of the room & never did return. I left there with tears pouring from my face. My husband was so mad. I don't want more drugs, I just want help. Not to mention that anyone who is dealing with constant pain on a daily basis can't handle anything else even a sprained ankle puts us over the top that we can't deal with. An injury or pain that someone else can just put to the back of their mind and move on we can't do it. It sets us over the top. A little "extra" pain is a major deal. I have fallen & I believe I broke some toes and a few in my foot. I did not go to the ER which my family was very upset about. It has long healed up but I know I have residual damage. All because I KNOW I would have a break down when they told me that I have drugs and what more do I want. I emotionally can't deal with it. I am scared to go to anyone else but my pain dr & primary dr anymore. They are the only ones who know me and don't treat me like I am the scum of the earth. I have never asked for more drugs from anyone. I have been like this for more than 15yrs now and don't know how much more of this I can take without losing my mind.
Specializes in NICU, Newborn Nursery, Pediatrics, CM.
Being an RN has been hard for me. I was diagnosed with FM in 1986. I was attacked by a patient in the ER and after being out for 2 and a half years with horrific pain and being sent to psychiatrists because they thought I was faking the pain and using it as an excuse to not work, I found a doctor that saved me. I was diagnosed and put on meds for the time being, but after developing a severe allergy to Aspirin and NSAIDS, I was dumped out with the doctor telling me he couldn't help me anymore if I wasn't willing to try by taking the very meds, that caused severe allergic reaction! I have been every part of angry that there is. Over the past two years, I have been out with severe radiculopathy in my right arm due to two bulging discs and an impinged nerve at C7. I finally found a pain management doctor who has cured the radicular pain with epidural steroids, but I still fight my way through with FM. I also find out that it may have been "enhanced" by the fact that in 1988 it took a multitude of doctors 3 months to figure out I was suffering from Lyme's Disease! I am just now hearing that Lyme's could play a role in what I have been experiencing as well. I have tried Cymbalta without success and also tried Lyrica (which pushed me to a point of suicidal thoughts). I got off of that and it was horrible! If I had known coming off of Lyrica was so bad, I would have never taken it! I have finally sucked it up once again and gone back to work as a pediatric home health nurse. Night shift didn't work, so I have gone to days, but it takes everything I have to put one foot in front of the other most days. I have shut up about saying how I feel anymore because no one wants to hear it. If anyone has any ideas, I am all ears! I don't know what to do anymore. Oh, and to make matters worse, I lose my health insurance in 5 days. It will take me two months more to get any back. I have emptied my bank account to pay my bills. I am to a point that if I quit my job, I have nothing. I need a break and just can't seem to find one!
Being an RN has been hard for me. I was diagnosed with FM in 1986. I was attacked by a patient in the ER and after being out for 2 and a half years with horrific pain and being sent to psychiatrists because they thought I was faking the pain and using it as an excuse to not work, I found a doctor that saved me. I was diagnosed and put on meds for the time being, but after developing a severe allergy to Aspirin and NSAIDS, I was dumped out with the doctor telling me he couldn't help me anymore if I wasn't willing to try by taking the very meds, that caused severe allergic reaction! I have been every part of angry that there is. Over the past two years, I have been out with severe radiculopathy in my right arm due to two bulging discs and an impinged nerve at C7. I finally found a pain management doctor who has cured the radicular pain with epidural steroids, but I still fight my way through with FM. I also find out that it may have been "enhanced" by the fact that in 1988 it took a multitude of doctors 3 months to figure out I was suffering from Lyme's Disease! I am just now hearing that Lyme's could play a role in what I have been experiencing as well. I have tried Cymbalta without success and also tried Lyrica (which pushed me to a point of suicidal thoughts). I got off of that and it was horrible! If I had known coming off of Lyrica was so bad, I would have never taken it! I have finally sucked it up once again and gone back to work as a pediatric home health nurse. Night shift didn't work, so I have gone to days, but it takes everything I have to put one foot in front of the other most days. I have shut up about saying how I feel anymore because no one wants to hear it. If anyone has any ideas, I am all ears! I don't know what to do anymore. Oh, and to make matters worse, I lose my health insurance in 5 days. It will take me two months more to get any back. I have emptied my bank account to pay my bills. I am to a point that if I quit my job, I have nothing. I need a break and just can't seem to find one!
I'm so sorry for what you're having to deal with, babynurse. I will say that gabapentin might be helpful for you. It really seems to depend greatly on the person as to how they respond to things like lyrica, cymbalta, and gabapentin, so don't let a poor response to one discourage you from trying another.
Specializes in L&D, GYN, Neo ICU, Nursing Education.
I definitely understand your pain with fibro and with the lack of support. Interesting isn't it that many of the most judgmental are in our chosen profession? In 1997 I fell when I was trying to gather my students together for post conference. A knee surgery and years of pain finally led to a diagnosis of fibro, chronic fatigue, and other autoimmune disorders brought on from that simple fall and stress. Mine was diagnosed after lots of rule-out testing. I got lucky and had an excellent internist who believed in fibro, he referred me to an excellent pain management specialist, and another excellent psychiatrist. It took years to find the proper medication regimen for me. Now, I still live with pain. That fall led to the demise of my beloved nursing profession. I miss it every day. I realize I'll never be able to work as a nurse again. I do volunteer bereavement counseling. I wish I could wave a magic wand to force those who don't believe in fibro and let them understand the reality of the condition, the damage it does to ones life, and the pain their lack of compassion we receive. We are not drug seekers or attention whores. We are people with a very real disorder. I tell people about the pain scale. I then ask them what their pain level is and at what point would they feel they would have to stay home from work. Most say 5 or 6 as their stay home level. I then tell them that when my pain level is at a 5 or 6 I think I'm having a good day.
So, to those of you with Fibro or other autoimmune disorders or pain conditions, hang in there. You are not alone.
Specializes in L&D, GYN, Neo ICU, Nursing Education.
: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.
Specializes in L&D, GYN, Neo ICU, Nursing Education.
Another by the way--Lyrica does help me, it has some side effects I dislike but the trade off is worth it. I have tried Gabapentin and it only helps some. I realized just how much Lyrica helps when I stopped taking it for a while because of the cost, even with insurance.
And, FIBRO FOG!!! It is more than real and it is one of the most frustrating parts of having fibro. I do hate it. I'm an intelligent woman but I sound like an idiot when the fog is present. I can't even follow a script line on a television program.
:twocents:
caliotter3
38,333 Posts
You know heogog, while reading your post it dawned on me that my viewpoint of drug seeking people has changed. The times that I have had a legitimate need for "the wrong kind" of med and had to put up with all the bad attitudes, has made me see the light. I now tell doctors straight up why I will not cooperate with any med regime to help my problems when they start talking the wrong kind of script. I was insulted for the last time. Not again while I have any say about it. And FM and CFS both sound like very, very plausible diagnoses to me. I wonder what really is politically correct nowadays? (I think my hypertension is going to kill me).