MyPainHasAName

www.mycyberspace.org

My Pain Now Has a Name - Fibromyalgia
&
The Masks That I Wear

06/22/2002 UPDATE
All those years, I had horrible back pain from my neck to my lower spine and pinched nerves that caused pain down my right leg and the sciatic nerve doing it's thing every night. Because the only diagnosis I had received was Osteoarthritis, I was sure that was my problem. I felt that it was so bad that it effected all the muscles around my spine. And there was the chronic depression all those same years that I was unable to shake or get true help for. ....and all the other symptoms that I thought were somehow associated with the Osteo.

In the last couple of years, with the help of Dr. John Marshall, Rheumatologist and Dr. Roy G. Kadair, M.D. in Baton Rouge, Louisiana, I'm beginning to find out that the Osteo played such a minor role in all this.

I do believe Dr. Marshall that I have Fibromyalgia. And, with his explanations, I now know that most of my back pain was from never sleeping at a Level 4. Even with medication to help me sleep, I still was not sleeping deeply enough for the muscles along both sides of my spine to ever be rested. Therefore, they would end up in knots, putting pressure discs, causing them to "slip" from time to time, pinching nerves .

When in for my yearly, and after reading my chart about the Fibro, Dr. Kadair questioned me about my depression. He asked if I thought it possible that instead of being depressed, during that time, that maybe I was just extremely exhausted all the time. Being that exhausted all the time would certainly make me not want to be around anyone and to be terribly grumpy. I have had to re-think all the symptoms I had for all those years.

I am so thankful that doctors are now aware of Fibro and how to deal with it. There is still no cure as of yet, but there are ways of living with it. I'm not even taking meds anymore for my Osteo on a regular basis. If I do too much, a couple of aspirin usually takes care of it.

Twenty plus years ago I was working a job that was both physically and mentally stressful and truly loved every minute of it. My husband and I had just signed papers on a new house. In the evening after getting off work, cooking dinner, doing dishes, laundry, etc., I would pack brown grocery bags. The brown bags fit easier than boxes in my little VW (I loved my VW.). I would make a trip to the new house about twenty miles away, unloading and unpacking the bags, putting things away, folding the bags to use again. Once home, I filled the bags up again, loaded my VW, finished the housework and went to bed for a few hours of sleep. On the way to work, I went to the new house, unloaded, unpacked, etc., then off to work.

I did this for about 3 weeks. Finally, I was in so much pain that I could stand it no longer and went to the 'doctor' (Staff Sergeant) at the Air Base. I explained to him all the things I was doing that I felt were making my back hurt so bad. He wrote me a prescription for a tranquilizer then he said that what I need was to find some work that would fill up my spare time. I tore up the prescription and left it on his desk in front of him. Over the years following this, my back slowly got worse.

During these years, I have tried to hide the pain. Practiced walking when I felt like limping. Practiced smiling when I wanted to cry or scream because the pain was so bad. I have gotten so good at hiding the pain that if I do mention it, doctors, family, friend and co-workers look at me as if they don't believe me, "...but you get around so good". Who can blame them. Also, during this time, I was going through a very abusive, 8 year marriage. Sometimes I think I gave up on myself and on life, too. Much of these 20+ years, I have felt like I was existing, not living, and sometimes still feel that way. Sometimes I've been asked what am I mad about. I guess there are times when the pain can't help but show, but is often misinterpreted.

This is the reaction I have received from other doctors until about 5 years ago. An MRI showed a problem with a vertebra in in my lower back, that was from a bicycle accident as a small child, that had my spinal cord pinched. The opening for the spinal cord was about 50% pinched closed. One neurosurgeon wanted to "try" to insert a tube into my spine to open the space to the original size. I said I'd pass.

Later, my right leg was starting to hurt me almost 24 hours a day, sometimes almost more than I could bear. It was worse at night while lying still for very long. There were many times I was lucky to get two hours of restless sleep. It has greatly affected my attendance at work. I was sent to a neurologist who did a nerve conduction test on my legs. He said my right leg was fine but the nerves in my left leg were almost non-existent and that is why my left leg never hurt me. (However, when an ant bites my right foot or leg, I usually don't feel it, but I do feel it when one bites my left foot or leg. Think he was a little mixed up?)

From there I was sent to another doctor that gave me a series of three epidural steroid injections in my lower back. I've been told that they usually last only about 9 months. It has been close to 1 1/2 years now and 'that' pain is much better. I still occasionally have problems with my back at night and the sciatic nerve not letting me sleep, but not like before the injections.

I have lost so many wonderful friends because they too had difficulty believing that someone that got around as good as I did could be in such pain. There were times when I was invited to go places and had to turn down the invitation with a lame excuse, I knew they would not believe my pain. I guess they finally thought I did not want to be around them, so the invitations quit coming. Later, it was much easier to keep everyone at a distance, rather than make friends and then loose them. Over a period of close to 20 years, I feel that I have lost social skills that are needed to fit in and no longer know how to make friends because I can't seem to let people get that close. So, as alcoholics bury themselves in alcohol, drug addicts bury themselves in drugs, I withdraw and bury myself in my computer. I now have well over 100 actual webpages on the internet, and still making them. I rarely get out except to go to work, rarely watch TV or listen to the radio.

In the last six months or so, I have come to realize that probably 80% of the pain now in my back is muscular. When the pain is severe, who knows or cares were it is, whether it's skeletal or muscular? I guess the doctor does, or should. I had felt sure the pain was from arthritis, and yes I do have a lot of pain from that all over and my feet and ankles pop with every step. It's embarrassing. I was diagnosed about 10 years ago with osteo arthritis. In all these years, it has never been recommended that I go to a Rheumatologist. A couple of months ago, I took it upon myself to go to Dr. John Marshall, Rheumatologist, in Baton Rouge. After giving him my symptoms, it took him only minutes to tell me he was reasonably sure I had FMS. He had to do some lab test to rule out a few other possibilities, which I am finding is routine procedure for FMS. He said I had Fibromyalgia. FIBROMYALGIA!!

I was so happy to hear this. That I had an incurable, chronic, severe pain that wasn't going away. Yet I was happy. Crazy don't you think? After his describing the syndrome, there was no doubt in my mind, where before, I never fully believed the doctors. For 20+ years I had been told that it was in my head. Family, friends and co-workers never seeming to believe me, like they too thought it was in my head. I had lost so many friends. Now, there is someone that believes my pain is not in my head. What a relief. And in doing this research of FMS, I have found that there are so many in this world that feel the same way I feel now. While visiting so many websites of other sufferers, they too are happy their pain now has a name. Not only did convince me that he knows what I have, but he seems to think there are ways to minimize it to a tolerable level. MY PAIN NOW HAS A NAME!! And there is hope, maybe only a little, but it is hope at last.

Some of my symptoms:

Generalized Pain
Fatigue
Stiffness
Morning Fatigue
Sleep Disturbances
Morning Stiffness
Tenderness
Numbness & Tingling
Cognitive Impairment
Dizziness
Dry Mouth
Affective Lability (mood Swings)
Feverous Feeling
Allergies
Itchy Skin
Hearing Disturbances
Night Sweats
Major Depression