Topic : Living with Chronic Pain

 My doctor just upped my Thyroid meds from pregnancy dosage of 25mg to 50mgs-  two nights ago, I felt more energy and happy than I have felt in 4 years!!!  I litterely felt like I was on a high!  My body was really starving for the meds, I guess.  Pathetically, they just cancelled my med insurance, just as I was seeing a light at the end of the tunnell---off to make phone calls I will.  God bless you--and thank you for your encouragement. Tara.

Of course, that's not the only back problem I have, so apparently no one can fix anything. I go to work every day, but I'm 45 and my spine thinks it's 90. My husband doesn't understand how come I run out of energy so quickly, and walking down three aisles is about all I can do without having to hurry to the car before my legs don't work and I fall--not to mention how much it hurts.  

  

I have to be at work at 5 A-M--thankfully I'm in radio news so I don't have to sit or stand or walk long--unless I'm at a scene. Any other job I'd be calling in sick all the time. I've seen two neurosurgeons, each one siad he could fix me until he checked out MRI's and X-Rays and determined that physical therapy wasn't helping much. Don't suggest a chiropractor-while I agree with the concept--I've seen three over the years, and each one made me worse. You can't crack a spine back into alignment that was never there to start with.  

  

People who see you up and about don't beleive your back is that bad--and my loving husband acts embarrased when I start hurting in public and have to stand or find a place to sit in weird positions until the pain eases enough to leave. He doesn't understand why I'm not fixed. 

  

Thanx for listening. Just needed to vent.     

Is anyone here living with TOS? 

  

fight4acure ; ) 

i have had steady increases in my daily dose and am now at .125 mcg.  you're right, as your boday adapts and the thyroid meds start to kick in, many things can change.  i remember having more energy and better skin and hair.  everything about me before screamed "tired and worn out"!  my doctor made me go through a biopsy and it did show lots of lymphocytes -- it was labelled "hashimoto's thyroiditis."  yet another auto-immune problem!  still it is the most common form of hypothyroidism and the treatment is the same... i am beginning to dislike all labels. 

  

i am so sad that your insurance was cancelled!  i hope that your phone calls have good results. 

  

i have been jerked around several times by BCBS and what has helped me most is to contact the insurance commissioner for my state.  it's a little bit of a kick in the derrière. 

  

take care and be well -- how is your baby?! 

  

prof-de-rien 

     Thank you, all are fine!  Just trying to move-in and clean our new home.  Lots of work, but how lucky we are!!!  Still no word about my insurance yet, but my mind is on a job interview with a local RE broker that I have on Monday---busy, yet again.  You are so nice--where are you from?

Thanks for writing back. I had another appointment with this same doctor and it was even worse than before. He was very unsympathetic to my complaints. In the past and right now, everytime I try to taper down to even 60 mgs of prednisone, I end up in a flare and right back in the hospital. I know that this high dose is not the best thing to be on, however the Imuran and other Chemotherapy agents that we have tried don't seem to be doing what they are supposed to do. I have tried Plaquenil (which I didn't tolerate very well), Cytoxan by mouth and IV, and now I am on Imuran. It's as though my body has built up a tolerance to these meds. He seems to think that I shouldn't be having any Lupus activity because of the high dose of steroids. But my joints were horribly swollen and my chest pain was almost unbearable when I got there. The only suggestion that he had for me was to take some advil (which doesn't help). I asked if he would give me a referral to a pain management doctor or clinic and he said that he didn't see a need for it. He wants me to do what he wants me to do and doesn't want to hear about what has happened to me in the past. But I'm not jeopardizing my well being by doing that. Who knows me better than me? Well, I wanted to tell him "thanks for nothing". I promptly came home and made a call to my primary care doctor here as well as my rheumy back at home. My rheumy from back home said for me to come back home for an extended visit and he would get me into a pain management center on an emergency basis and we would work out what we needed between here and there. My primary care doctor (who doesn't really care for the rheumy that I saw here) prescribed me something for pain and told me to deal directly with her and that she would follow whatever treatment plan that my old rheumy set up for me. So, all in all, I am hoping that things work out. But, just like with Lupus, I have to take things one step at a time. As for how my old doctor takes care of my meds for me, I usually have my sister pick them up from the pharmacy and send them to me via overnight mail. I was trying to eliminate this by getting set up with a rheumy here, but you see how that went. It just kind of sucks that there is only one rheumy here in my immediate area in my medical plan. And in order for me to go and see another rheumy outside of my area, I have to get a direct referral from this rheumy. I hope that you are well and that you weren't too late for your appt. I'll keep posting. It's nice to see that I am not alone.

i am probably wrong but i think doctors are required to give you a referral -- and they need not be governed by your insurance plan.  you have the absolute right to go anywhere -- and pay cash!  i know that many of us have had a less than enjoyable time with our insurance companies but giving you 1 rheumy to choose from is no choice at all -- give your company a call [and a letter] explaining things.  a good insurance company will also want to know why you are disatisfied with dr. doodoo-head.  tell them!  and tell them he refused to give a referral. 

  

i don't remember where you are but i am assuming that you're not in an urban area.  no nearby university hospitals?  that's where i always try to steer people who have complicated medical issues -- because that's exactly the type of patient a teaching hospital/clinic wants.  if you need to stay overnight there are usually nearby motels that give a special rate to clinic/hospital patients.  lots of coupons! 

  

but i see that you have a long distance solution.  still, i fear that there will come a time that you'll have to deal with dr. doodoo-head.   suppose you break a toe and have to stay in the hospital for extensive ToeObservation?  if dr. doodoo-head is your admitting doc, he'll prescribe who knows what, and all your tapering will be for naught. 

  

i am blessed with an internist [as you are blest with your primary care and rheumy] -- anyway, my doctor is sometimes like a cyborg.  i am on so many drugs that i get worried.  every time my liver enzymes are up, i freak out, etcetera.  he looks at the medicines as the primary culprits for many of my problems and tries to metholically test which of the group is the offending one.  it was under his guidance that i got down to 10 prednisone and 20 + 10 cortef.   

  

PLEASE!  why am i even taking that amount?  when you taper down your prednisone, you must do it very, very slowly, maybe 1-2 mg a week.  if you flare, add a mg back [talk to the good rheumy!!].  i became "steroid dependent" and will probably never get below 10 w/o  flares.   

  

NOTE:  the 20+ 10 cortef.  SIGH.  it even blows my mind.  because of the steroids for lupus over extended time, my adrenal glands STOPPED WORKING. what is the only treatment for that?  STEROIDS!  catch 22...  the adrenals govern lots of important stuff and there's no way to live w/o them.  i was fainting everywhere.  i remember standing in front of my students and thinking "oh no, down i go..."  scared them to death. 

  

i am feeling a little better.  i have been breaking my pain doctor's oath - by taking LESS pain medicine.  it is called a  drug holiday.  anyway, i was reassured that yes, i need those meds and i thank god i have them. 

  

ONE STEP AT A TIME is right! 

  

prof-de-rien 

 Hello. 

 

This is my "first" time on any message board. 

 

For the past hour, I have just read and felt everyone's emotions.  

 

I was injured in 2002 at work. I had a snap in my neck and right side shoulder, Both of my hands went into a craped position and had shooting pain down both arms and hands. 

 

Long story short and 7 Dr. later and 3 carpel tunnel surgerys, I still have the same problems and know one knows what or why. 

 

The only "great" thing is I have a wonderful pain managment Dr.. 

 

This also falls under Work Comp. My hearing will be in Feb.. 

 

Dose anyone have any experience with Work Comp? Also, I have not worked in a year and 3 weeks. Any advice on filing for disablity? 

 

Thank you for any advice. 

 

Diana in Windy Wyoming 

Hi all! 

  

I've been "out of circulation" for a few days.  I'm in a vicious circle of pain, can't sleep, fatigue, no ambition, etc.; but regardless of the reasons, you all know the feelings I am talking about.  I don't know if it is due to a fibromyalgia flare, new sleep med, change in mattress topper, weather changes (which in Kansas City has been like a roller coaster for the last two weeks), or what but I'm just not doing well.  I felt good Sat and Sun and slept well last night.   

  

Today I'm just "blah."  Got a call in to my doctor but today I'm not even good at waiting for a return call.  I know Mondays are hectic there and I am not the only one seeking help.  I'm antsy, frustrated, hurting, got lots of things "streaming" through my mind.  Can' t even seem to stay focused on one task very long before I'm looking for something else to do.  This is NOT like me at all. 

  

I just needed to vent a little.  Guess I'm also looking for a little understanding, TLC, support, etc.  Even my three cats seem to "know" things are not quite right with me and are trying to comfort me.  I feel the need for even more than they can provide today. 

  

Thanks for "listening." 

  

Marcellyn 

Welcome, Diana. 

  

How well I know it is windy in Wyoming.  I did not learn to drive until I was in college in another state.  I thought (and had been told) I was a very good driver so was looking forward that summer (many years ago) to driving with my parents from the midwest to California.  This would be the first time they would ride with me other than just around town.  It was a beautiful sunny morning in June.  I was driving the interstate in Wyoming towards Cheyenne.  I couldn't imaging what was going in because I was "all over the road."  I was crushed because I knew I was a much better driver than I was that morning. 

  

My parents were very kind and made no comments on my driving.  We just watched the scenery and the occasional wildlife.  As it neared lunchtime, we came to a large "oasis" up on a hill--large commercial rest stop, beautiful restaurant, gasoline pumps, small store, etc.  So we stopped for lunch.  When we got out of the car in the parking lot, my parents and I discovered why my driving was so poor--it was so windy!!!!!   So much for my memories of Wyoming.  ;-) 

  

Back to your message.  I don't have any advice on non-federal Work Comp but a few suggestions.  When I was doing some research on my own disability (Federal), I looked for any information I could find.  I should have looked up the web sites for you but you can find them.  Don't discount any information you may find at sights that don't pertain directly to your situation.  You can find a wealth of information elsewhere and adapt it for your circumstances.  

  

Sites to search are the Department of Labor and Social Security Administration, Job Accommodation Network (JAN), The Fibromyalgia Partnership, and The National Fibromyalgia Association.  I think it is the last site that has links to two or three attorneys who work specifically with SS disability and fibromyalgia but they also have links on their webs sites to other sites for information on filing for disability and one of them has a good questionnaire to guide you in filing for disability. 

  

To you and anyone else who is considering disability please be aware of the Job Accommodation Network (JAN) if you are not already.  It is sponsored by the Department of Labor I believe.  It lists many injuries/illnesses that fall under the ADA (Americans with Disabilities Act), the specific problem, and suggested reasonable accommodations to request an employer make under the ADA. 

  

So why am I bringing up reasonable accommodations when you are applying for disability?  You should be able to show in your application for disability that you have considered reasonable accommodations to allow you to continue working.  If you don't know what accommodations might be available, you will have no information available to show that in your case such accommodations will not work and why.  

  

My advice--do your homework!  Look at your application from the standpoint of someone who is healthy and does not believe you meet the criteria for disability payments.  Based on documentation (not emotion) does your application support your claim?  There should be no statements that cannot be supported by documentation. 

  

Hope this helps.