Tuesday, August 31, 2004

Good News, Bad News

photo of the uconn health center

Universtity of Connecticul Medical Center

 The good news is, I most likely don't have rheumatoid arthritis, the bad news is that I still have no diagnosis. And the pain, of course.

 I had an appointment with a rheumatlogist today at UConn Health Center. My PMD sent me, saying I should see a specialist, since my sed rate is up. (This measures general inflammation in the body.) Now I actually work for Correctional Managed Health Care which is run out of UCHC, although I work in the local women's prison. (Or used to work, as the case may be), I know my way there, even though CT is one of those small states that has no roads running from one corner up across the to the other, but it takes an hour and a half. 

 By the time I arrived, I was hurting! No good med management today; I don't take break through pain meds when I'm driving. It's a huge hospital, but I eventually found rheumatology, schlepping in with my X-rays and lab work and info from a myriad of doctors. The specialist looked at all my info, my answers from his huge questionnaire I had filled out, and asked, "Why did your doctor send you here? I see no indication that this is rheumatoid in nature."   Please understand, I don't want to have rheumatiod arthritis, I just want to know what is going on in my body. This doctor was nice about it, ordered more bloodwork and X-rays, and sent me on my way, apologizing for not being able to help me. In my experience most doctors take a look at any woman who weighs 300 pounds, and assumes she is not in touch with her body at all. I spent way too long working my way into my body awareness to be put off by such assumptions any more. I am always on guard for any hint of this, and am grateful he did not pull that on me.

 But...as I trudged out to my car at 3pm, I had one of those black hole experiences, when all the good work I've done around  learning to love and listen to my body gets sucked away, and I am left with self-doubts. Maybe it's all in my head, maybe I am exaggerating the pain so I can't go back to work (nevermind that I went back 9 weeks after open heart surgery!), maybe I'm doomed to carry it around with me forever, maybe things will never improve......and more and more and more. I was crying by the time I made the car.  

After I got into the car, I began to feel silly. Here this doctor had told me that in his esteemed opinion I don't have a painful autoimmune disease, and I was absolutely sobbing! Partly, I blame my reaction on the hospital-just being in one drags me down. Also, I am always exhausted, either part of the problem (whatever it is) or because I wake a lot at night due to pain. And I do quite desperately want an answer, a diagnosis, something to point to and say, there-that's what's going on-and I didn't get that today.  

 I may never get it, a grim thought, but I do have to keep going. Giving up just doesn't seem like an option I'm willing to take. I wiped my eyes on a dunkin donut napkin, and set off for the long drive home. When I finally arrived, I took pain meds (oh thank Goddess for pain meds)! and collapsed into my recliner. I was still telling Rene about my day when I dozed off.   Tomorrow, I see my orthopedist-the one I don't like, but I'm not expecting any real help from him, so I may not feel as let down tomorrow. We'll see. Tonight, Roxy, my Chihuahua and I are going to bed.  

 Blessings, Margo    

30 comments:

momdadat447 said...

Bless you Margo :) I to again know your pain, I was told 4 yrs ago I showed signs of precancerous cells and I have never been back to that doctor.  Every time I make an appt. anywhere I get no where no answers. I to just want to know :) I pray that your feeling better today and today's appt. goes 100% better. You are in my prayers Margo ((((((((BIG HUGE SNUGGLY HUGS))))))))  ~~Angela~~

csandhollow said...

Have they investigated fibromyalgia? It is a chronic pain and fatigue disease. Some doctords do not recognize it but it is real. They try to say it is in head. Thank you for your visit. I will be putting this one on alerts.

depetunia said...

dear margo; please know that I too ;understand --------been there --------- everheard of '''STIFF-MAN'S SYNDROME?-------- PAINFUL -SPONTANEOUS MUSCLE CRAMPING----FROM NECK TO SOLES OF FEET--------THE SOLUTION? I;M QUOTING------------- ;;IT'S AUTO -IMMUNE; ORPHAN DISEASE''----DON'T REALLY KNOW MUCH ABOUT IT ==UNQUOTE-I TOO WAS IN THE MEDICAL FIELD ---------I THINK THAT MAY KINDA BE A HINDERANCE -THEY EXPECT US TO '''JUST DO THE BEST YOU CAN ---------REST&RELAX ''/ WELL' I RETIRED AT 60 AFTER 35 YRS. NURSING &THE PAINS &CRAMPING HAVE LESSENED -------FROM 4-5 DAYS A WEEK ----TO 2 -3 -NNEURO. GUYS WANT TO MEDICATE WITH RELAXERS' [[SLEEP YOUR LIFE AWAY]-DOGGONE IT IS EXASPERATING =GOOD LUCK TO YOU .

maxsox5 said...

YOU DON'T STATE EXACTLY "WHAT" PAINS YOU BUT SINCE YOU MENTIONED ARTHRITIS,I WILL TELL YOU WHAT HAS MADE A 200% DIFFERENCE  FOR ME
GLUCOSAMINE(1500 MG)CHONDROITIN(1200 MG) 2X's DAILY
EVERYONE THAT  I HAVE TOLD THIS TO HAS TRIED IT AND SEEN A VAST IMPROVEMENT
I BUY THE STORE BRAND AND WHEN THEY HAVE IT ON SALE I STOCK UP
MY HANDS WERE DRAWN UP LIKE A CLAW AND PAINFULL (NOT NOW)
I HAVE THREE CRUSHED DISCS IN MY BACK (VERY LITTLE PAIN NOW)
MY KNEES WOULD SNAP AND POP AND BE REAL PAINFUL(THEY AREN'T NOW)
I WOULD WAKE UP WITH A STIFF NECK AND KNEW I WOULD GET A MIGRAINE THAT DAY(HAPPENS LESS NOW)
MY AGE IS 54 SO I GUESS I WAS GETTING OLD BEFORE MY TIME!!
HOPE THIS HELPS YOUR PAINS
IF IT DOES TELL ALL YOU KNOW ABOUT THIS """MIRACLE"""
I DO!!

rbjhnsn701 said...

I know the feeling. I hurt all the time, especially in the mornings. I too was tested for rheumatoid arthritis and was found to be negative. I have tried glucosamine and chondroitin for six months...no relief. I now take celebrex to manage the pain but am not happy about the long term effects of rofecoxib. I suspect I may be dealing with fibromyalgia but cannot get confirmation. I am forty-nine years old and I feel ninety.  I do know that adequate sleep is crucial...without it symptoms are far worse.  We must keep asking questions and keep searching for answers. Someone out there understands the reality of this mysterious problem and knows this is NOT all in our minds. It is posstble that we may also be suffering the effects of CHRONIC FATIGUE SYNDROME. which mimics the symptoms of fibromyalgia. I will pray for you and hope that if you find help, that you will share with all of us who hurt too. Best of luck.

Robin in North Dakota

sharleeg said...

Someone else mentioned this but I wanted to reiterate this to you Margo. You most likely have Fibromyalgia and it is indeed painful. Their are definate trigger points in fibro. Get on the internet and look it up, then call and find out if a Doctor treats it before going. There is no cure, but just having your feelings validated and to know you're not crazy helps. The main trigger points are in the elbow. across the back of the shoulders, the lower back from hip to hip, the front neck bones and knees. Social Security now recognizes Fibro as  a legitimate disability. DO MORE RESEARCH>

barnesprtlnd said...

Hi Margo,
I wrote a comment on the Sunday Outing page. In case you don't get it here it is again. What you are more than likely suffering from is Fybromyalgia. The AMA has finally realized that this is indeed a real disease. No cure yet, but now that it's recognized they may acually try to find a cure. Try to find a physician in your area that is familiar with the condition. Check out the sights on Google for Fibromyalgia info. Best to you from a sister in pain.
Rebecca

kgm5s said...

HI Margo. I know ur pain. i've been to 3 arthritis doctors plus infectious disecese doctor ,they now tell me it's fibroyalgia...i was a persom who could rip a house apart in a day, now....pain, always tired 46 yrs old  thay put me on celabrexso i'll see how it goes..good luck to u

avantimelissa said...

Hello Margo,

Have you tried Physical Therapy? I work in a Physical Therapy office and see cases like yours all the time and a lrge percent ofthose cpoming in leave feeling better.  Ask your MD about it on your next visit.

shatkatie said...

i know how you feel.if i could find somethig to make me just function iwould be so happy. i'm an amputee for 2yrs. sometimes i'm in basic denial then all the sudden it hits hard my friend says i keep too many emotions at bay.now and then i do let off a primal scream, though, i also had 5 staph infections and heart attack. one set back after another,pain,pain and    more pain.                                          

plato35000 said...

Readingyour account is like reading a diary I have written for too many years.Yes ,my sed rate is up.No,thereis no  Rheumatoid factor in my blood work. I would give anything for a diagnosis of this chronic pain I have had for so long. I become less active each year . I often wonder if my children believe me when I describe the pain I am in. I mention it less and less and have given up hope that this pain wil ever leave. I certainly know how you feel if that helps any.








plato 35000

plato35000 said...

Readingyour account is like reading a diary I have written for too many years.Yes ,my sed rate is up.No,thereis no  Rheumatoid factor in my blood work. I would give anything for a diagnosis of this chronic pain I have had for so long. I become less active each year . I often wonder if my children believe me when I describe the pain I am in. I mention it less and less and have given up hope that this pain wil ever leave. I certainly know how you feel if that helps any.








plato 35000

mom112020 said...

Bless all of you out there cursed with constant unrelenting pain.                             What do you find most difficult  to tolerate, the pain it's self or the fact that when you try to explain to others ( including medical personel) you often get the eye rolling effect?  I have suffered with back pain since high school. I was born on a farm and a tomboy to boot and I admit I abused my body. there was over a year that I worked, on my feet with no such thing as a break 96 hours a week. I worked in a beauty shop 6 days a week and had 30 minutes to get to my night job as a bartender. I had to board out my two boys that I was raising alone. Both my boys had birth defects. They were correctable thank God but I had no insurance or child support and I was to proud to go on welfare therefore I worked it off. I have found my first hope in 30 years at " Center for Pain Management" in St. Louis, Mo. I still have some pain but is reduced and I'm still in treatment. I thank God and hope the best for you.

mullenpl78 said...

Regardless of orign of pain/cause....the effects are devastating to say the & my fibromygia may never improve,  The pain is unbearable at times... I cry alot.  Sooooo, focus on getting your mind off your self and distract yourself as much as possible.  I try to be positive, but am also a realist.  I like the phrase,"Well, it won't kill you, but it sure will make you wish you were dead!!!!"
I've done alot of alternative therapies, triggerpoint injections, PT, meds, hydrotherapy, hypnotherapy, healing touch, medical massage, counseling, etc., etc., etc.!!!

butterflyxox79 said...

thank you for telling your story. i to am having unknown pain and a new dr that is taking me off pain meds. now how will this story end.  i do hope you find help.         hugs from butterflyxo79

vickiputnam said...

Margo... have they checked you out for polymyalgia rumatica?

ojudjudy said...

Margo,I also have many ahes & pains.  One neurologist  did a spinal puncture and found my pressure to br 260.  it should be 150, so he withdrew enough fliud down to normal and mny pain went away within 24  hours.  The fluid showed too many white blood cells and I had numerous tests for cancer  (all negative) and their best guess was a viral infection.  But I have had two rheumatologists diagnose me with fibromyalgia and there seems to be a myriad of pill mixtures, and finding one that works for you is trial and error.  You have to find a doctor that recognizes fibromyalgia and has a clue asto help you.  Also only you know how your body feels and reacts to different meds.  GOOD LUCK!!!

shelleyshap said...

Dear Margo:

Do not giveup, you are not crazy.  If all else has been ruled out than unfortunately or fortunately you may be suffering from fibromyalgia.  I say unfortunately because many doctors do not yet recognize this but it is in fact a real syndrome.  The best thing  that I feel you can do is try to find a doctor most often a rheumatologist who is familiar with fibro.  Then proceed, counseling often helps to better understand and cope.  I have lived with this for many years and still have difficulty accepting the fact that I cannot do what I want to do and I am tired of always being "sick".  Many people do not understand, but I am beginning to learn that is their problem.  Take care of yourself and do not give up.  

brenkaydel79 said...

Hi,  I too went through many, many drs. & so many tests that I can't count or even remember, plus steroid injections only to finally after tree yrs. of this to be told I have VERY CHRONIC FIBROMYALGIA!!!! IT IS PURE HELL EACH & EVERY DAY OF MY LIFE. I've now had this syndrome for 8 yrs. & I have gotten worse with the pain, but like another said on this.........YOU WON'T DIE FROM IT, BUT ALOT OF TIMES WISH YOU COULD!!!  The pains are unexplainable to describe, ONLY THAT ITS A HORRIBLE PAIN THAT NEVER GOES AWAY! I am on : oxycottin, celexa, vioxx, lipitor,klonopin, & even have a glycerin solution just to have bowel movements! I PRAY THATS NOT WHAT YOU HAVE, ITS ONE TERRIFYING SYNDROME THAT EFFECTS NOT ONLY YOU, BUT YOUR SPOUSE & YOUR WHOLE FAMILY. Your pains don't show & many people don't believe anything is wrong & ITS ALL IN YOUR HEAD!!! I TRUELY PRAY YOU DON'T HAVE THIS & THAT YOU GET SOME HELP TO GO ON WITH YOUR LIFE IN LESS PAIN! GOD BLESS YOU ALWAYS.

texthaicaj said...

Hi ,
Sorry  to hear about your problem wit the medical world you have all the symptoms of fibromyalsia Ive done all your about to yuo need to find a dr. that believes in this first  my sed rate is always  up and that is a good tell tell sign mostly there is only pian management but some of the sufferers of this horrible disease have found theres is cause due to sever allergy to preservitives like msg
if you can find a good natural path dr in your area they may be able to help
unfortunatlly for me I was not that lucky if you arent suffering from the allergy
form contact me I may be able to guide you a little. dont give


                                                   a friend in pain K. H.

roxy7919 said...

   My apologies regarding your uncomfort, but more so for the lack of knowledge  MD's have about Fibromyalgia (FM)!! I am only 21 but went through about 4 years of intolerable uncomfort before learning about FM, i would get very upset at every doctor who'd test for arthritis or lupus then tell me i didn't have either and refer me to a psycologist. Through my own research I heard of FM and all its many side-kick ailments (IBS, Rhenouds, Chronic Fatigue ect.) , and also learned of many helpful forms of treatment.
                The main thing to remember is that there are so many suggested types of treating FM, and right now no one thing is proven the most effective. Do whatever makes you feel the best, whether it be acupuncture, chiropractic care, water aerobics and specific diet, massage and herbs, ect. .
          I have a subscription to a magazine called ' Fibromyalgia Aware' which is a wonderful source of info and support. (They also have a web site www.FMAWARE.com ).  Personally I dont believe that prescription meds will benifit you, one method is to correct sleep which leads to a habit with sleep aids, the other is to boost energy which does the same with stimulants.  You may at times know more about it than your doctor but find one that is open to your thoughts rather than just telling you things. Good luck and know that you are not alone at all with this.                        JMG

hv253 said...

HELLO, DID YOU GET CHECKED FOR LUPUS, MS, ETC.
I CAN RELATE TO YOU BECAUSE I AM IN CHRONIC PAIN.
EMAIL ME HV253

SENDING YOU BLESSINGS

hv253 said...

HELLO, DID YOU GET CHECKED FOR LUPUS, MS, ETC.
I CAN RELATE TO YOU BECAUSE I AM IN CHRONIC PAIN.
EMAIL ME HV253

SENDING YOU BLESSINGS

tawny2121 said...

Please get a test for Lyme disease from a Lyme literate doctor.  The titer test is useless.  I went undiagnosed for 8 years, before having a western blot test, which gave the diagnosis.  I spent 10 weeks on IV antibiotics, and then bi-cillin shots, and then oral.  Before that, I was diagnosed with stiff man syndrome, or "I don't know", very frustrating.  I still take pain meds, celebrex, etc., but it's better than before.  Not CONSTANT pain, every day now.  The muscle cramps are horrible.  No one understands those.  I wish you the best of luck, and I know your pain is REAL!  Mine began in 1989 with a muscle spasm in my neck.  After the third one, I couldn't breathe.  I could go on and on, but I think you get the picture.  God bless you.

pspatches said...

Hi Margo,
I can truly symphathize with you.  I posted my life at this site http://www.angelfire.com/ny/lymedisease/index.html.  It's what I went thru in trying to find a diagnosis for what I was feeling.  It took me many, many years.  To this day, I still suffer the damages of Lyme disease.  As Tawny2121 suggested, I would definately demand a Western Blot test done to suspect or rule out Lyme disease.
You can go thru this list of symptoms of Lyme to see if the pattern fits.
http://www.ilads.org/burrascano_1102.htm scroll down to Symptoms List.
I wish you the best of luck.
Regards,
Pat

abbyakela2 said...

I feel your pain. I have been diagnosed with Fibromyalgia, Please look into it. I have recently had my calcium level checked and found out it is low an 8 suppose to be at least 10 I belive. Since then I have found that low calcium alone can cause major pain. If you dont take any other advice as we are not Dr's please ask to have your calcium level checked. Parathyroid gland may be underactive. there is a term they use for it but I am unsure what it is. E-mail me if you would like a link to some of the low calcium things I have read Good luck and my thoughts are with you.
Sue

aawesomeangel said...

I FEEL YOUR PAIN ALSO MARGO, I KNOW IT IS EXTREMELY HARD.  MY DOCTOR SAID I HAD ARTHRITIS THEN THEY TESTED AND SAID NO. AFTER ABOUT 50 DRS. I WAS DIAGNOSED WITH FIBROMYALGIAMAND CHRONIC FATIQUE. AFTER SPENDING YET ANOTHER YEAR IN PAIN AND GOING THROUGH A DIVORCE (MY HUSBAND THOUGHT I WAS LAZY ANS CRAZY) SO DID MY KIDS,  FINALLY I HAD WHAT THEY CALLED A CEREBRAL STROKE AND WENT TOTALLY PARALIZED TEMPORARILY. THREE MONTHS AND EVERY TEST ON EARTH DIAGNOSED ME WITH M.S.   FINALLY A REASON  FOR THE PAIN BUT THEN THE ANSWER OF NO CURE OR NOTHING TO STOP THE PAIN.

carensuec said...

I just read your entry, I too, walked around with chronic pain, about 3 years ago I finally got fed up. I worked for 21 years as a nurses aide, and yes it is hard on the body but that in itself could not explain all the pain I was having and after many visits and many different opinions I was finally diagnosed with Fibromyalgia and osteoarthritis.
Have you talked to your primary care phycician about this? Has it even been considered?I still have alot of pain but I no longer work, having been qualified for social security, with diagnoses of osteoarthritis and Fibromyalgia..Alot of the time I can manage my pain but stress and interupted sleep ( from pain) contribute to flare ups.Fibromyalgia can be diagnosed with a simple test of mapping. If you have 11 of the 18 tenderpoints you can be diagnosed. Let me know how you make out. Good Luck,

sofame9 said...

Margo,

Bless you and your courage.  My daughter has Reflex Sympathetic Dystrophy.  A neurological pain disorder that is worse than Chronic Pain.  A lot of Fibro sufferers develop this horrible, painful illness.  It takes a good eye and someone who understands and believes this disorder to diagnose it.  She never had an injury or surgery.  She got it from an injection for what they thought was a mortons neuroma.  No such evidence of that now.  She is now 22 and doing her best with pain management medications.  I would suggest you research on knowledgeable web sites, fibro, RSD, CRPS.  I understand there is a good group in Connecticut for RSD/CRPS.   So look and try to find a very knowledgeable pain doctor.   Sometimes neurology is a good department to get a doctor to evaluate you.

Good luck and we will keep you in our hearts and prayers.

je1957 said...

Hi Margo,

It's sounds like a good chance this could be some kind of neuropathic pain. Without knowing much about you health history--I would advise to look into this. Start with a MRI of the Cervical and thoracic sping to rule out a condition called syringromyelia many people with this condition have a very hard time with trying to diagnose this. The symptoms are various--different from person to person. An MRI is a simple non invasive test that would be worth doing to a least rule out this condition.
Good Luck
Jenny