A continuous battle

Gina Parnell - Billsmoviestar@aol.com

Original posting, 2002-11-03:

I am a 43 year old woman who has been off work for nearly 5 months (I'm a legal secretary) and I STILL have not been diagnosed with anything! (although I think my current neurologist is getting on the right track with a possible diagnosis of coccydynia.) Here's my story...

When I was 10 years old, I slipped on the ice and fractured my tailbone. At that time, (and still to this day), there was nothing to do about it but to let it heal on its own. It did and I went on to live an active life which including dancing lessons, bike riding, playing like a normal kid, cheerleading.

When I was 27, I delivered my child naturally with MUCH back labor and pain. At 30, I had a total hysterectomy as a result of many severe problems, at which time my doctor related he really had to do quite a bit of work to tack up my bladder and bowels.

At age 37, I experienced my first herniated disc at L5-S1. I initially treated with a chiropractor (because I was walking around for a few weeks like Quasimodo) which provided much relief. At least I didn't feel like my whole spine was being compressed down. I then followed up with a neurologist who recommended physical therapy, which only aggravated my condition. After declining additional PT and not returning to the neuro-surgeon for further consideration of a microdiskectomy, I "learned to live with it."

A year later, I experienced another herniated disc at L4-L5 and at that time, my chiropractor indicated I had a very unstable sacrum. The PT he recommended only aggravated my condition so I again "learned to live with it." This chiropractor indicated that my best possible solution would be when my sacrum would fuse naturally over the course of time. (Sorry, but I didn't feel like the 20-30 year span in which this natural occurrence would happen was anytime too soon to help) At this time, I was started to experience increased stiffness upon standing after sitting for any length of time. Over the next several years, I treated chiropractically and as time passed, my sacrum and coccyx remained "unstable." My chiropractor did the best he could, being he was not a "medical" doctor, but still the pain was increasing in my lower back. My legs were dragging more, pain was increasing throughout my low back and hips, as well as piriformis and sciatic pain, with numbness and tingling in my legs and feet.

This past June, I had a bout of incontinence and my chiropractor referred me to my family doctor to rule out bladder problems. This was negative and the x-rays they did only showed my old coccyx fracture and minimal decrease in disc space at L5-S1. She gave me a shot that day of Depo Medval for pain and prescribed Zanaflex, a muscle relaxer. I requested my chiropractor refer me for an MRI which indicated the L5-S1, L4-L5 bulge and a NEW bulge at T12-L1. Because of my incontinence, my chiropractor was smart enough to know that this was out of his realm and said I needed to follow up with either a neuro or ortho and to possibly rule out a condition for which I can't remember the name of right now, but it involved pinching off of the nerve bundle at the bottom of my spine. The ortho I saw indicated that NONE of my symptoms were spinal related and referred me to a Urologist who indicated that my bladder condition was SECONDARY to my back problems. Over the course of a few weeks, maybe a month or so, I experienced problems urinating and was catheterized over a short period of time. I was also seen by a Neuro who prescribed Ultracet and sent me for PT, which only aggravated my condition, leaving me in such pain they had to wheel me out of the facility. Even the pool therapy which they said was a "softer" therapy left me incapacitated to where I was again wheeled out. They then had the know-how to stop my therapy and referred me back to my neurologist, who then told me to try just the neuromuscular massage. I found a very competent neuromassage therapist who gave me a wonderful massage but again I couldn't walk out of her facility without the accompaniment of two people because I couldn't walk without SEVERE pain in my hips, low back and had VERY LITTLE control of my legs. The medications only provide minimal relief and the only activity which really helps is sleeping in a prone position. Mind you, I have a family and during my waking moments have managed to do laundry and cook, sometimes feeling better but still experiencing excruciating low back pain radiating into my hips, leg pain, a feeling of swelling in my ankles, wrists and fingers, some ankle pain, a funny pain/weakness in the back of my thighs near my buttocks and when this occurs, I know it's time to lay down again. Three of my doctors have suggested Fibromyalgia, which runs in my family, but thankfully, my new neurologist is making headway and hopefully will diagnose me soon, and probably with coccydynia.

I have found a wonderful neuro psychiatrist who is working with me for pain management. She has prescribed Neurontin and I'm currently taking up to 5400 mg., Concerta which is a drug used to treat ADHD, Natural Testosterone which is supposed to help joint pain. I am also taking Effexor (an antidepressant), Bextra ( an anti-inflammatory) and Backsfa (another anti-inflammatory) as well as continuing with my Ultracet and Zanaflex. Taking all these alone is enough to drive anyone crazy (which is the way I feel at times).

I had a good stretch which lasted about 2-3 weeks wherein a couple of days within that time period I could move about really good. I could finally go shopping and accomplish more around the house. On the advice of my doctors, I was trying to increase my activity. But that only lasted a short time.

I am now back to 1/2 day of productiveness around the house or shopping, and then I'm down again for 2 or 3 days. EVERYTHING is a struggle and I get easily fatigued. I'm ALWAYS trying to pin my fatigue on either my meds, my activity or my body. Sometimes holding my coffee cup is too much for me.

I'm having an EMG performed 11/8 and follow-up with my neuro in December. He has indicated that I may need to have further testing done by means of checking my spinal fluids. I've had a bone scan (which revealed osteopernea? so I am taking a Calcium supplement daily), a CT scan of my sacrum and coccyx which was negative, hence the EMG.

Thanks to your site, I have learned about the Dynamic X-rays which I will ask my neuro about. I have also learned from your site about the surgery, but at this point, my husband says "no way", but I am keeping my mind and options open. I'm tired of not being pain-free or at the very least, able to function and get back to work. (This email has taken me 2 sittings to accomplish in a period of one week because I hurt so much after sitting at the computer).

I have also learned from reading other peoples' stories that sitting on a hard surface is better. That is the case with me, at times. Other times I need a soft chair and some times I can't even fathom sitting nor do I have the energy to think and physically type.

I have and still suffer tremors (but MS has been ruled out), memory loss, concentration loss, slurred speech, vision change and problems with blurring/double vision on top of all the physical pain/problems. Some of the problems, I believe, may come from the Neurontin, but it really keeps the pain at bay so I'm damned if I do, damned if I don't.

I'm applying for Social Security as I honestly believe I'll continue to be off work for at least the next 7 months.

I know the frustration that others I've read about are and had been experiencing and I'm hoping that my doctor will diagnose me soon and be open to the idea of the dynamic xrays and anything else that may be open to me. (He seems pretty open-minded). I need to get on with my life!

Update, 2002-11-17:

I had my EMG/NCV tests done. The only thing they showed was some nerve damage L5-S1 with radiculopathy, left leg. (Duh! I've known that for years!!) Since being introduced to this site, I've learned quite a bit and at my appointment I asked my neuro about Dynamic x-rays. He said he wasn't that familiar with them but that he was willing to check into it. Soooo, in my effort to "hurry" the learning process, I've printed out the info from this site to take to him at my next .appointment (December 16) Until that time, he just wants me to see how the Baclofen works.

I did have two good days this week, almost scary! but now I'm back down again. I started getting an irritable intestine (which I've had before from the Testosterone and the Neurontin) so I've decreased my Neurontin dosages. I'm allowed to take anywhere from 1800 mg. to 3400 mg. Yesterday I only took 1800 mg. but then I was up at 3:45 am in PAIN at which time I took 600 mg. Neurontin and two Tizanidine. Those kicked in only about 20 minutes. BUTT, my sleep was still interrupted. Butt, truth be told, I haven't had too bad a day - maybe a 6.

After going to my Neuro Psych doctor today, I'm going on a trial of Adderall 30 mg. a day in place of the Concerta, to see if it helps with my memory, concentration (from the Neurontin, I believe) and pain. I'll update to let you all know.


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