4 months of hell. Please help me...

Julie - jenhackwith@yahoo.com

Posted 2013-08-18

Please help me find an answer that does not involve surgery. Below is chronological of all I have been through in 4 months. I keep feeling like I am going to pass out all the time and I am in so much pain. I need help as I don't know what to do.....

March 2013-

- Tae Kwon Do and training to walk 40 miles for the Avon Walk for Breast Cancer. Looking back, we believe I may have fell on my tail bone one or two times during Tae Kwon Do and that may have started the pain. End of March would get extremely tired and feel faint during training.

April 2013-

- Still training and Tae Kwon Do

- 4/2 standing and sitting at work and felt like I was going to pass out. Rushed to ER they claimed fatigue.

- 4/11 Was having pelvic discomfort asked Gyno to remove IUD. Took two pulls and almost fainted.

- 4/13 Did 20 miler felt like pass out at mile 3 and pushed through did all 20.

- 4/15 See Endo to check thyroid. Levels were normal. Still feel off.

- 4/17 Difficult to sit due to pelvic pain. Saw gyno and initially treated for Pelvic Inflammatory Disease (PID), which turned out negative. All other gyno tests were negative.

- 4/18 riding bus home. Pain got worse with each bump. Pelvic area on fire. Went to ER had CT Scan done. Nothing found. Said see gyno for ultrasound.

- 4/21 noticing pain moved to outside hips and inside groin

- 4/22 Helped at kids school fair with lifting things up stairs. Sat in car and drove to work. Felt really ill when arrived. Able to work one hour and then went home. Tried to drive self to ER and almost passed out from pain or nerve impingement and ended up by ambulance to ER. Pelvic inspection and ultrasound found nothing.

- 4/23. Sitting in chair at GP made me want to pass out.

- 4/26 Had MRI to look for pelvic stress fracture. Nothing. GP and I are lost…..

- 4/29 Bending over feels like sharp stabbing pain as if needle pulled through Vagina. Tried to get milk from the store and felt sharp stabbing pain and felt like passing out again.

- 4/30 Evening felt so ill, thought was dying from pain and pure illness.

May

- 5/1 Left leg on fire. So much pain! Tried to walk around, but couldn't. Huge ball of fluids started forming on top of thigh (white, not red) and left leg swollen. Rushed to GP and GP sends to ER to get another MRI and check for possible blod clot. No clots, said slight bulge in L5-S1, bursitis on left hip. Infectious disease doctor stopped by said nothing in his department. ER tells me to see an immune doctor.

- 5/2 a huge rash breaks out on the left calf. Shingles! At age 36.

- 5/3 See rheumatologist about immune system. Ran every test possible. All negative. Feel like passing out while sitting on bench. Get passed back to the gyno…… Left leg and buttock is killing me. Shingles is killing me.

- 5/11 Gyno and I are at wits end and does one more inspection. All the pain is attributed to the pelvic floor muscles. Sent to a women's pelvic floor physical therapist. Confirm pelvic floor muscles are in complete spasm. Treatment begins to calm floor. Thinks coccyx and sacrum may also be an issue. Buy Tush cush to help.

- 5/23 Family vacation. Spent one day sitting on the plane and walking too much and felt like would pass out again. Spent the next 10 days in a wheelchair for the cruise, resting on the bed, hot bath soaks, and time at the spa to massage the pain away. So much pain in the sacrum and left leg and buttock however better by the end of the trip.

June

- 6/5 Came back to work. First time since 4/22! Constantly switching from sitting to standing. Tolerated it, but exhausted.

- Continue Pelvic Floor PT 2X a week. Noticed hips are uneven and work on straightening it out. Do some self traction in rehab pool. Floor will not relax completely. Don't know what's causing it to spasm.

- Tried to drive to the mall and walk with daughter (20 min drive each way and 20 minute walk) on way home almost passed out while driving from the pain. Had to pull over and have friends come get us.

- Discomfort sitting at work. Started feeling like going to pass out again. Co-workers rush me to hospital and they double check thyroid (normal) and nothing else they can help me with.

- End of June see Dr. Mary Dupont who prescribes vaginal valium suppository 5mg and 100 mg gabapentin at night. She does an anal exam and touches the tailbone and almost threw up/passed out from the pain. Thinks tailbone is an issue and calls it coccydenia. Floor finally relaxes and I am able to walk normal.

July

- Still doing PT. (Internal, external massage, STIM, Kegels, Ultrasound, joint manipulation). Able to walk more quarter to half a mile and to tolerate more sitting with a tush cush. Working part time from home and part from office. Commute on bus and subway and half mile walk is killing me. Pain starting to creep back.

- Week 2-3: hubby's back goes out and I am carrying the workload of caring for the house, kids, hubby recovering from surgery and dog who just had ACL surgery. Big gardener and so am planting and harvesting as this makes me happy. Lots of bending and squatting and lifting. Meds are helping. See Dr. Dupont and she is happy with the progress, but still pain to sit and can't drive more than 10 minutes. I show her the pain in the buttocks and back. She pushes and says to see a physiatrist for SI injection as they can help.

- 7/28 Neighborhood picnic and I am packing the car with tables and coolers. Felt good.

- 7/29 Bad idea yesterday and health starts getting worse. PT upset as floor tightened up again…. Not too much but a little. Buttock pain is back.

- 7/31 Pain is getting worse. Barely tolerated the 15 minute drive to see Dr. Nelson a physiatrist from National Rehabilitation Center. We review history and is shocked no one has ordered an X-Ray of the sacrum coccyx and a lumbar MRI. MRI showed significant degenerative bulge of L5-S1 with mild tear. Asked for copy on disc. Xray radiologist said slight deviation of coccyx from sacrum, but the picture showed a clear step with the full tailbone hanging straight.

August

- 8/6 Have Cortisteroid injection in SI joints. Immediate relief! I felt great. Was able to walk around the house and do light chores. Sit/lay a bit on the sofa and work on laptop.

- 8/7 Sore from the injection. Showed PT the xray and was shocked as never saw a coccyx hang before. We worked on loosening the pelvic floor muscles and used a gentle tapping of the muscles to get the floor to loosen up.

- 8/8 Dull pain turned to extreme pain in SI joints like they were on fire by the afternoon! Pain was intense everything tighted up. Saw Doc and said it would get worse before it gets better and it takes 14 days before it fully kicks in. Scheduled a shot for coccyx.

- 8/9 Rode passenger to a kid event (25 min laying back with cush), walked 100 feet stood in line for 5 min and felt like going to pass out. Went back to car.

- 8/10 Moved funny in morning and felt like passing out again. Laid down for 3 hours and felt better.

- 8/12 Butt/thigh/groin pain getting better. Able to move more and do more chores and some gardening.

- 8/13 Had steroid shot in coccyx. During the procedure, Dr. Nelson noticed the tip of the coccyx now make a complete L. We declare it dislocated/unstable. The lidocane helped and I am hoping the steroids will too. They think if this doesn't work I may need surgery to remove it. I don't want this, but not sure what else to do as I can't keep feeling like I am going to pass out. I am going to lose my job at this rate. Rested and read everything I could about the coccyx. Scheduled Nuerosurgeon to review bulge at L5-S1 and Orthopeds to review coccyx.

- 8/14 Showed the print out of the L shaped coccyx to my PT and it broke her heart. She declared I may need surgery as she might not be able to help me with an unstable coccyx. Cried…. Did external massage and she noted that the buttock, thigh, and lower back muscles were extremely tight. (Could this have been from the pain from the shots? Could these spasms be causing this problem and pulling my tailbone?) A dull pain is in the coccyx from the injection.

Could this all be L5-S1 disc and uneven hips with SI causing the pelvic floor to spasm and pull on the coccyx?

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