Endometriosis, Herniated Disk, Death of Child, now Sjogrens ?!?! - Endometriosis Message Board

Luvmypugs · 09-24-2003, 10:33 PM

Hi everyone, I am new to the boards and just want to let you all know that I sincerely feel for all of you in pain. I was perfectly fine up until about 3 1/2 years ago. I weighed 115lbs., walked 3 miles every night and the worst thing that ever went wrong physically was a headache occasionally. Then.......

I started having terrible periods and terrible pain in my left ovary. Turns out, I had Endometriosis very bad and had to have surgery. Well, that doctor was a regular OBGYN and I was worse when he got done with me, so 9 months later I had to have the surgery again by a specialist and it was back with a vengeance and I had a golfball size tumor behind my left ovary. But, this doctor was wonderful and he fixed me right up.

Then, one day at work, I was a Graphic Designer, now a stay-at-home Mom, my lower back was hurting so bad I could hardly walk and as the day progressed, it got worse and worse. By evening, I was in tears and when I went to sit on the couch, my whole body collapsed and I could not get up. Thank God our pharmacist is our good friend and he brought me some meds to get me through until I could get into the doctor's office the next morning. Well, an MRI was scheduled and a herniated disk was found.

Then I got pregnant in November of 2000, after 7 years of trying. Had a c-section in March 2001 and delivered a little girl who was brought into this world early because she had a rare disease known as Potters Syndrome and died shortly after birth. I thought my life was over.

I got pregnant again the end of April 2001 and delivered the most precious baby boy

in January 2002, but not without complications. Three months of Progesterone shots in the hips, which my husband had to administer every night (poor thing). Carpal tunnel surgery at 3 months pregnant. Emergency Gallbladder surgery at 6 months pregnant.

I have since had 2 rounds, 3 sessions each, of epidural spinal blocks for the disk. They are no longer working. I have tried cortisone shots, they are no longer working. I have Restless Leg Syndrome very bad, every night of my life. Have tried everything from herbal, to Parkinson drugs to Tonic water with Quinine, nothing but Hydrocodone works.

I also have migraine headaches but not as frequently lately, thank goodness. I can't take Zomig, Imitrex, Maxalt, none of these work. The Maxalt that orally dissolves under the tongue works fairly well if chased with Hydrocodone and I lie in a dark quiet room and rest for a few hours, but that's not easy with a 20 month old

.

And now, my PCP thinks I may have Sjogren's Syndrome. My sed rate has been elevated to 50 (normal is 0-20), my iron levels are extremely low. My hair is falling out. I ache all over, am tired all the time, have no drive to go or do anything. I don't even want to talk on the phone. The only thing that makes me feel even half way decent enough to function is Hydrocodone. I am now taking 7.5/500 and take 2-3 every 4-6 hours, along with Advil occasionally. I am going for bloodwork tomorrow to have the RA and ANA tests done and have been referred to a Pain Management center but can't get in until 10/16. I'm just very thankful that my OBGYN referred me to my new PCP who is absolutely wonderful and says we are going to get to the bottom of what's wrong with me.

I have been trying to gather all the information I can on all the symptoms I have to try and come up with some sort of solution as to what's wrong with me. I used to be such an outgoing, energetic person, now I'm not, and I want so much to be again. Because at 34, this stinks!!!

I know this post is extremely long and I apologize but I guess I needed to really talk about all this and see if anyone had any input for me, be in good or bad I sure would appreciate it so much. Thank you all and hope everyone's days are pain free, or at least close

.

Thanks and have a wonderful day!
Melissa

HockeyCrystal · 09-25-2003, 01:03 AM

Wow, I'm terribly sorry for all that you have been through.. I don't really know much about Sjogrens or any of that stuff, but I am glad that you are being sent to a PM clinic. I am also happy you found the board here, because you will hopefully receive tons of support from the very sweet and caring people here.

I mostly wanted to welcome you here and let you know you found a wonderful place if even just to vent about your pain.

I hope your appointment next month goes well with the PM clinic.

Hope you keep posting here, because I love basically everyone here, since we all have the pain issue in common.. A lot of us are very close...

Again welcome, and I hope you find yourself at home here

Much

Crystal

------------------
-21 year old chronic pain patient..
-Have a transitional vertebrae @ s1.
-Slight bulges in disks L4-L5 and L5-S1.
-adhesions from years of not knowing gallbladder was bad then had it removed, lots of abdominal pain now... also referred pain in mid and upper back from gallbladder as well...
-Chronic severe migraines, and tension headaches... Taking Axert for migraines.. Working well...Nothing px'ed for tension headaches... Sometimes even get both kinds of headaches at the same time..... Really weird.
-Lots of low back and mid back pain growing up..
-Then was in 2 very bad car accidents not even a year apart, 1@17y.o. and 1@18y.o. Had fractures in both... Arm in one, and wrist and hand in the other wreck. Arm was broke by airbag.. Wrist and hand by impact of hand slamming into steering wheel... Also had back, neck and chest (from seatbelt) pain from these wrecks. And in one slammed knees into dash. Also fell on ice a couple yrs ago and landed right on tail bone. This is what my PM doc feels caused the bulges.
-Also have had a few cysts on left ovary, that burst.
-Also had pre-cancerous cells on cervix, and had surgery in Dec. 2002 to have them removed. Have been having normal paps ever since! (Didn't have one of those for like 3 years!)
-Now having lots of knifelike shoulder pain between spine and shoulder blades..Also having a lot of hip/pelvic pain and soreness under my butt, if that even makes sense...And pain in low-back/sacral area and tailbone area...like it's going to crack and break or something... It hurts to sit for very long at all.
-Pain overall between 7-9 everyday with OR without meds.. Because Percocets aren't working well anymore at all.
-Still somewhat undiagnosed, but have had these tests for my pain issues... :
*CT Scan on entire spine
*CT Scan on abdomen
*X-rays on shoulder and entire spine
*MRI on head and spine
*Also been to these specialists: Chiropractor-Did adjustments, and a few other treatments; Orthopedic surgeon-gave stretches and PT exercises to do, also px'd Ibuprofen800 which I can no longer take any NSAIDs; D.O. (my PCP)-Did adjustments, and px'd my meds until I got into pain management.
Pain mgmt doc and his P.A. Have changed my previous meds, and plans on doing Trigger point injections and a couple steroid injections on November 19, 2003. Hope that helps! Then maybe I can go off these pain pills! If not, who knows what's going to go on, but I'm trying to stay positive!

-Started at PM Clinic on 9/9/03, and went wonderful. First saw the P.A. Then saw the PM doc on the 18th, and he's absolutely wonderful.
-Moderate case of TMJ
-Lots of throbbing pain in left knee and left arm from previous fractures.. (knee from sports; arm broke in a car accident)..
-Also arthritis in hands.. Broken 6 of my fingers several times, and also broke 3 of my toes...
-Meds I was taking, then the meds I was changed to and I'm taking now : Percocet 7.5/500 every 4 hrs as need for pain changed on 9/23 to Percocet 10 (hope it does better!), Flexeril 10mg 2x/day changed on 9/9 to Zanaflex 3x/day, Tofranil 50mg @ bedtime changed to Gabitril 40mg @ bedtime on 9/9, Imitrex for migraines changed to Relpax on 9/9 then to Axert on 9/18, also given Zoloft 50mg in the morning on 9/9 to counteract all the meds that make me drowsy to keep me more awake.

mokita · 09-25-2003, 05:37 AM

Hi Melissa

and welcome!

I am sorry to hear about the loss of your beautiful baby girl

and of all your other troubles. I must say that you have an amazingly optimistic outlook in spite of everything!

You may not think so, but your post has alot of energy in it ~ even if you feel You don't! That said...

I am glad that you're going to a PM group....and that you're having those tests run. Those of for rheumatoid arthritis and various other 'ailments' - is that correct? When are those tests being run? Sorry if you said...I still need my 2nd cup 'jo!

And...the 10/16 appt isn't as far as you think! I know going thru yrs of pain and frustration gets to the very best of us....but, you are on the right track! It's wonderful that you have a good PCP, too! Trusting your doc is #1 in my opinion. That way, you can truly work as a team to figure out what's going on.

As for the hydrocodone.. have you had liver enzymes tested? You may want to consider going on a longer-acting med that doesn't have the APAP in it - at least while you're in process of trying to figure out what's going on w/ body. Will be easier on liver in the long run.

Keep us posted. Good luck and God Bless you and your little boy and hubby!

Karen

------------------
9/22/00 24 hour labor, baby posterior, left tailbone killing me
12/00 MRI -normal-but pain still-began taking vicodin
2/8/02 - 2nd baby born - Csection-healthy girl
2000-11/02 various PT + pain meds
11/02 Referred to Neuro
3/03 NEW MRI - slight bulge L3-L4, DDD, neural foramen,Superior aspect S1 and L5 Nerve root involvement-Neuro Refers to PM for ESI's
(2 Rt Transforaminal,1 lumbosacral,3rd one numbed tailbone little
5/9 - Discogram - shows Tear L4 w/ significant leak onto nerves, DDD
Performing doc oversedated, False Negative
7/8- Dept Head ClCl consult
7/28 - ClevelClinic for Facet Injection, changed to Caudal Epidural after seeing xray of displaced coccyx;also,coccygeal manipulation
8/12 - 2nd caudal inj/no coccyx manip
8/14 -coccyx manip AGAIN
9/25 sched appt to begin tx on Disc Tear @ ClevelClinic

Luvmypugs · 09-25-2003, 08:02 AM

Mokita thank you for saying you saw positive energy in my post. You don't know how good that made me feel. So many days, well most everyday, I feel so run down and tired but yet I have to get up and get going for my son and believe me my patience is not with the best of them and that makes me even more upset with myself.

I am having my RA and ANA tests done today and yes I have had my liver enzymes etc. checked just Monday as a matter of fact and all was good. After these tests results come back and depending on the outcome, I'm going to talk to PCP and hopefully the new people at the Pain Management Center I'm going to about new medications. I just hope the new doctor will be as caring as this one.

Well, I need to go and get myself and my little guy ready for a busy day. Wish us well.

Everyone have a good day!
Melissa

amyleigh28 · 09-25-2003, 03:28 PM

Hope you don't mind if I jump in here but I just had the same test that you are going to have. I had an ANA and mine came back poitive wiht a titer of 1:320 with a nucleolar pattern. I have had a lot of body aches, joint pain, extreme fatigue and constantly running low grades fevers so I know where you are coming from. I am usually a very outgoing person coaching softball and going to my husbands games but recently I have just felt like laying on the couch and not moving!! Just go to work cause I have bills to pay. Anyway I have an appt. next Thurs. with a rheumatologist to find out what is going on. Sorry you are having so many problems but hang in there and hopefully you will find out what is going on soon.

Amy

P.S. I also have had trouble getting pregnant. I had a miscarriage in dec. 2000 so I am with you on that front too.