My introduction

[SLadylani]

Hi,

My name is Sara, I am a RN, an I have chronic pain. I am in limbo with a diagnosis right now, and can't get any doctors to take me seriously! I've been labeled a drug addict in the past, which is why I am going for my MSN, in Palliative/Hospice care for nurse practitioning. I want to do conferences and in-services to health care providers to explain the difference between addiciton and pseudo-addiction. Sigh.

So I have posted my problems in other sites. I don't like to self diagnose or become obsessed, but my pain and exhaustion have become so bad I have to resign from my job, put shool on hold, and am now home, or should I say floor bound (no couches or beds for me!).

Basically I have an autoimmune disease. Current diagnosis are Fibromyalgia, Lupus, Low back injury, Cervical kyphosis, Serioous GI problems/damage, possible diverticulitis, chronic constipation with intermittent diarrhea. Symptoms are Extreme and constant and ceaseless end your life type of pain, exhaustion so bad it hurts, the GI problems, nausea and vomiting, joint pain, neuro and myelopathy symtoms, sweating, sebaceouus hyperplasia, MRSA in a sebaceous gland that recurrs, tremors, twithces, clonus, osteopenia/soft bones/teeth, pronate ankles, dark urine, elevated liver enzymes, positive ANA, swollen lymph nodes. The all time horror as my friend just died of lymphoma with symtoms similar to mine.

Diagnosis I've come up with and trying to rule out: Multiple sclerosis, Lymphoma, sebaceous gland carcinoma, spinal cord injury.

Test needed: Spinal ttap, LDH, MRI. Only problem, doctors dont take my pain seriously. Currently vicodin and OTC pills and herbs are useless so I know longer bother, due to osteopenia and a prior back injury chiroprators wont touch me, massage worsens it, yoga hurts my joints, and im too exhausted to exercise. I rely on Icy hot all over my body and hot showers with occasional epsom salt tub soaks and sleep on the floor if at all.

I just find it so hard because as a Hospice nurse I did not tolerate my patients being in pain, and I have a strong belief no one on this earth deserves to live in pain. I also believe if a person has pain, there must be a source, and am tired of being labeled as a psych caase, I know better, Im in the health field.

Anyone else experienced this frustration?

[SLadylani]

I am prescribed Lyrica right now and found it to be quite helpful, however it is not covered by my insurance and is so expensive. I finally got it covered by the Federal drug Assistance Program, but I feel the dose is too low, but cannot change it at this point as this prescription is written for a year.

It was a miracle drug for me at one point and would probable work a lot better for me right now if I managed to take it consistently and wait for the benefits. But as I'm inpatient and fear the weight gain, I'm scarred!

[blazenredhottie]

i have had FMS/CFS my whole life ,well since i was 12 i am now 41 and i have found lyrica to be my life saver it helps with my pain so much as far as the low dose elavil and the ultram crap you can find some other fool to try them on i have gone through them all at one time or the other and am now takeing my good old methadone/loratab with lyrica of course and i seem to do alot better on those than any     oh and liveing in the desert is a must also help humidity and wind are not your friends and addiction comes from a cronic need for relief from nonending  cronic pain   jeanie /person in pain

[SLadylani]

Thank you for your post. I would like to try Baclofen, I'm not too found of Neurontin as i seem to have more side effects from it than good. I'm on a very very low dose of Elavil right now, so it's hard to see if it has any benefits. It's so nice to know there's someone out there! For all my life I wanted to go to medical school, and I totally wish I were a doctor right now so I could just order the darn tests I believe I need myself. I just find it so frustrating that i have logical explanations and answers for things and they tell me to see my psychiatrist. I was going for my Master's degree in palliative care nurse pratitioning, before I got sick, who knows, may be if I get better I still can... And I'm a strong believer that pseudo-addiction is a greater and higher underlooked epidemic in our society than addiction is. But health care providers are just catching up, so they don't even know what it is yet, and it's barely being taught in medical classes. Only difference is you treat a pseudo-addictors pain properly and they cease seeking more drugs, where a drug addict continues. But ifd youy continue to denie a pseudo-addictors paiin, it will look like they are continueing to seek drug, obviously because they are stiull in pain. It's just so frustrating to me, this life thing, and the whole medical profession.

[Itstime31]

Hi Sara,
and me too, worked in health care most of my adult life, on the front end though, lastly had a high, wonderful spot in clinical research/new drug trials department. Ugh. Pain, yes! I think I am on the fine line of being called a drug seeking patient. When my MS flares the pain is so excruciating that giving birth might be less painful. I lived the limboland nightmare for 3 years, undiagnosed, told I was nuts, depressed, hypochondriac, you name I was labeled it. I do so empathize with you and all that are frustrated and desparate for answers. All I want to say is I know the pain and I do so hope you find a doctor and some regular pain meds to help you. Have you tried Neurontin, Baclofen?
Catherine

[SLadylani]

Thank you both for your replies!!! Its nice to meet 2 people in the medical field (yes, I consider pre-med the medical field! :)). Things got really bad night before last and I actually e-mailed my mom to call 911, as ,my pjhone recently broke. I complaiuned of typical neuro symtpoms (I've been getting horrible paresthesia attacks in my right leg, it randompply falls asleep), and my neck...I just coiuldnt take it asnymore. And my typijng is bad, mainly because i type on the floor I think, have trouble with bad fine motor skills, and have sweaty palms when I get in hot flash mode. The doctor, excuse me, was an arogant a--. He of course said I needed to seek chronic pain management, there was nothing he could do for me, and if I went there again the would not treat me because it looked like I was drug seeking,. It's so hard knowing there's something wrong, and knowing what tests need to be ordered. I just can't handle the pain anymore, I have vicodin but don't bother as its just like tylenol. Icy Hot. He did give me 6 percocet, I took one today and felt well enought to go to the grocery store. Yesterday I was out. My mom, the hardest thing of all, lives just 3 hours away but doesnt think it's serious enough to come and see me. It hurts so badly that she doesn't believe me and won 't fight for me. I just don't know what will become of me if the pain gets wlorse, I know it's imposssible to explode but....

[peekawho]

Hi, and welcome, fellow RN!

I'm struggling with chronic pain also, yet I don't carry the label of an addict...yet.  I'm sure it's only a matter of time.  When you don't "get better", doctors get frustrated and assume the reason must be because you are a drug seeker.  Of course it can't be because THEY aren't able to find and treat the cause of the pain!  

Sigh.  Anyway, I feel for you.  I am "just" a low back pain-er, for almost two years now.  I work in L&D, but will not be able to do that for much longer.  My coworkers do much of the lifting for me, and yes...I take "drugs" at work.  All prescribed, but it makes me feel like a piece of c.r.a.p anyway.  I have asked others to look at my work critically, and if anyone EVER feels as though I'm impaired, then that's my last day on the job.  I try to take as little as possible.  

Nice to meet you, but sorry for the circumstances.   You'll find this community a great place of support and caring.

Peek

[Haddock_Entrap_Propulasion]

I know where you're coming from.  I have had chronic pain and fatigue for 3 and a half years now, and have been misdiagnosed with "Just stress", fibromyalgia, reccurrent and chronic infections of various sorts, and mono.  I've been tested for everything under the sun except MS, which my doctor at the time dismissed out of hand because I'm only 19 and because I wasn't having visual symptoms. It took until last month for anyone to get a bead on what the problem actually was, and I don't even know yet if they're right.  Your symptom profile is eerilly reminiscent of that of a friend of mine, who is currently waiting for a refferal for an MRI to check for MS.  She was fortunate enough to finally get a doctor who takes her seriously, and is willing to look past the fact that she also has depression, to find a physical cause.  
I notice that you have hit a lot of letters twice in typing your post.  Are you having problems with your fine motor skills?
If you can, keep trying new doctors until you find one who is willing to work with you.  Explain that you are not looking for pain medication, just testing to rule out a few terrifing possibilities, and to figure out what's wrong with your body.  (Maybe ask that they make a note in your chart that you aren't looking for narcotics, so you won't be suspected of "doctor shopping").  
I know I'm just a pre-med student and you're an actual health-care professional, but if you have questions, or just want someone to talk to, feel free to message me.