Living With Chronic Illness and Disease

Living with Pain Frustrations
By Arleen Williams

I am writing this story because I hope help others who are going through what I am going through with pain and undiagnosed pain.I am a 54-year-old grandmother that has multiple health problems. I have PMR, which is Polymyalgia Rheumatica, a form of arthritis. I also have Degenerative Disk Disease, and several-ruptured disks with spinal cord compression.

The Ruptured Disk with Spinal Cord compression is very painful. It causes me very excruciating pain when I lie down, so sleeping is difficult. Usually, I get one hour in bed at night, and then have to get up and take a pain pill, wait an hour, take a muscle relaxer, wait an hour and then take another pain pill and wait 2 more hours before I get enough relief to lie down on the couch for a 2 hour nap.

Here is my story: in October of 2001 I started having low back pain that would go down my right leg. I went to my doctor and he prescribed muscle relaxers to try to ease the pain. This did not work, so he sent me to an orthopedic doctor. I went through several MRI?s to try to find the culprit of the pain. What it showed was that I had ruptured disks from my thoracic spine down to my lumbar. The ruptured disks in the lumbar region are the ones that are compressing my spinal cord. The doctor said that he wanted to try some epidural blocks to see if that would help. This did not work either. The longest relief I received from the epidurals was 2 hours! Believe me, those 2 hours were important to me. But then the numbing medication wore off and the pain was still there.

Since the doctors of today are so specialized, when the blocks did not work I was then sent to a Neurosurgeon. The first Neurosurgeon I was sent to ordered an MRI and a Mylegram. I had them both done but the person that did my mylegram hit a nerve or something and this caused even more pain. Now instead of just being on the right side it affected both sides. I literally fired this doctor because he wanted to do surgery and not find out what the cause was that was creating so much pain. I then went back to the orthopedic doctor and he sent me to the Neurosurgeon that found a high SED rate and I underwent 2 more MRI?s and more lab work. Still, there was no diagnosis for the pain.

From there I was sent to a Neurologist. More MRI?s and lab work but this time something showed up in my lab work they did not like. My SED rate was extremely high. Normal is 30 or below. Mine was 125! Needless to say the doctors were concerned and so was I. I was then sent to a Rheumatologist. More lab work and x-rays were done. I also had a bone density test done with this doctor. She put me on some meds for arthritis, rheumatoid arthritis and finally something for pain. The lab work came back and still my SED rate was high. I was then sent to an Ophthalmologist. This was to rule out Giant Cell Arteritis that is sometimes associated with Polymyalgia Rheumatica. I had to undergo a temporal biopsy for this. The result was negative. I have the PMR but not the GCA. I was then sent back to the Rheumatologist that then sent me back to the Neurologist.

This set of lab tests were still showing an extremely high SED rate so I was then sent to a Hematologist to rule out bone cancer. Needless to say, by this time I was terrified. I had just recently lost a brother to lung cancer and all I could see was having to undergo chemo and radiation therapy!

The hematologist wanted to do a bone marrow biopsy so that was scheduled. She also did more blood work. The biopsy came back negative, thank God! So I do not have to see her again. I was then sent back to the Neurologist.

I saw him just this past week and I have to have yet another MRI! This time a full spine MRI to see if they can determine where the major problem is. I also have to have nerve conduction studies done on my legs.

Having an MRI may not sound like a major deal to you but for me it is difficult. I am very claustrophobic and have to be sedated just to go in the open MRI machine.

The pain has kept me from doing a lot of daily things like washing dishes, cooking, cleaning and even going to the grocery store. I can only stand on my feet for 10 minutes maximum before I go numb from my waist to my knees. Even when I go numb there is excruciating pain, so I am very limited in what I can actually do. This has kept me from having my grandchildren spend the night or even just being able to play with them.

The doctors have me on so much medication that I don?t know what it is for but I take it in hopes that it works.

To cope with my pain, I read a lot. I pray a lot more. I also have developed my own craft web site. This is something I can do sitting down. I also have just recently learned to knit so I am going to try my hand at making slippers for the grandchildren. I try to keep busy even if it just doing something that occupies my mind. On my good days I make the most of it by doing much needed housework. My husband has had to be bread- winner and housekeeper since May of 2003. That is when I last worked.

So I say to you if you are suffering pain such as this, DON?T give up. Keep searching until you find a doctor that is willing to find out what is wrong with you and treat it. I have good doctors that are working together and are very concerned. So keep busy as much as you can, pray because prayer does change things, and keep searching for your answers.

About the Author: Arleen Williams has her own craft web site at, where she offers free craft patterns and craft projects. Arleen is also the administrator of a craft forum, where you will find links to thousands of free craft ideas. For permission to reprint this article, please email Arleen Williams at