Sjogren's Back Pain

Hello back pain friends and know that you need to stay in touch with your symptoms and get to know what your back pain is trying to reveal to you.

I was living my life in 2004 and I was working my usual 10 to 14 hour days and loving every minute of my work, success and my life. All was well until I one day developed what appeared to be a case of the hives on my head and my hands and I worked all day and then that evening I went to a walk-in clinic and I was told I had the hives and to take benedryl and it they should resolve in a few days.

I went home and the next day I felt a horrible cramping in my throat/esophagus and it was so painful to swallow and if felt like I swallowed glass. I called the walk in center and they said it was probably just the hives had gone into my digestive tract and my esophagus or trachea. So I hung up and I went on for the rest of the week and the pain was terrible when I swallowed for the next week.

The hives went away in five days and I thought I was just exposed to something I must have been allergic to. I did however, find out that next week that the client that I had in my office on the very same day developed the hives, also. I also found out that the owner of the building I lease my office from, had a history of unknown hives for the past two years.

So my hives went away and the fall came and I got sick with the flu every month and I had a never-ending cough and cold and flu and I thought I would crack my ribs coughing.

Finally, the winter months were ending and now it was early spring of 2005 and I started to notice that I felt like I was walking on little balls of plastic under my feet and my muscles in my throat/esophagus, calves, back, and thighs were cramping up like charlie horse cramps each and every night. In the morning when I would awake and I started to develop pain in my wrists and hands and legs and feet and now in my epigastric region.

Then in the fall of 2005, I started to notice a horrible plastic ball-like pain in the left posterior of my lower back and I lost 40 pounds. I said I need to stop working so much and start to focus on all of these symptoms and get myself into a doctor because with the weight loss and pain I must be dying.

Well, that was the beginning of my three year journey of going from doctor to doctor, from specialist to specialist and getting no clear explanation of the now severely disabling back pain and now muscle pain throughout my body and the severe pain in my throat and the cramping and now severe inability to sleep.

I went to Mass General Hospital, the Lahey Clinic and all local specialists as well, and it took until May of 2008, when I got rid of the third primary care doctor I had who clearly could not diagnose me. I went to pick up my records that I found a sheet of blood work that was never revealed to me and I brought it to a new primary care doctor and he looked it up and came back and said, "You need to see the neurologist again and your bloodwork is positive for Sjogren’s”, and that is what I had.

The reason I am writing you this story is because I presented with pain in my back, hands, legs, feet, sciatica, as well as neck and epigastric. A pain specialist sent me to his friend, who is a neurosurgeon, and this neurosurgeon took out a cervical disc and a lumbar disc and when I got sicker and sicker with pain after he did the second surgery, he just vanished.

I then went to get help from the best doctors in my state and was told "none of your 20 MRI films from 2005 forward ever showed any indication or reason for surgery".

They went on to say that if you had what the neurosurgeon said you had, "severe spondylosis of the spine", that surgery is contraindicated, as the outcome for surgery on such patients is so horrifically poor.

So to all of you who are suffering with unexplained back or neck or muscle pain and fatigue, please, please do not stop looking for the answer, do not let any doctor intimidate you and do not allow any doctor to do any spinal surgery on you until you have gotten the opinions of at least 2 more specialists and have all their opinions in writing.

Back and neck surgery is permanent and irreversible and if the surgery is not the answer, you will suffer horrible pain from the surgery, if it fails, and the pain will be for nothing.

Please to all of you suffering with spinal and muscle pain, make sure that you do not have an underlying autoimmune or rheumatological condition, like Sjogren's, lupus, diabetes, small fiber neuropathy, mixed connective tissue disorder, Raynauds, scleroderma, etc, as that may be causing all your pain and symptoms and medication or IVIG infusions could help stop it or reduce the spreading of it.

If you do have unnecessary surgery, it will be too late and irreversible. Back surgery should not be done unless you have gotten the opinion to do so by at least 3 specialists and you have exhausted every other option. Additionally, your entire medical history should be reviewed by any doctors stating that they want to operate on your spine.

There is so much new medical information on autoimmune disease, like Sjogren's, and how it will cause classic carpel tunnel-like symptoms with negative EMG's and muscle pain and cramping, and back or disk pain, as it dries out your discs and glands and eyes and affects your gastrointestinal system which causes further back pain symptoms. It is not due to discs which need to come out or be fused.

There is Johns Hopkins Sjogren's Center. They did a very big National Institute of Health study on Sjogren's in 2009 and after that they opened the Sjogen's center. There is a very famous and unbelievably knowledgeable and experienced Dr. Ann Parke at St. Francis in CT. There is a very famous neurologist and neuromuscular specialist at Mass General Hospital in Boston, MA, Dr. Gilmore O'Neil. There is the Lahey Clinic in Burlington, MA and a great and incredible neurosurgeon Dr. Stefan Kim.

You must always feel that your primary care doctor is listening to you. In RI, I suggest Dr. Gregory Sadovnikoff and you must have an excellent local neurologist, and in Rhode Island, I suggest Dr. George Sachs. Then you need a local rheumatologist who will know what to do and how to take care of you and they must understand Sjogren's.

Do not just go to a surgeon and let them tell you that you need back surgery. Research every hospital and what they are doing in spinal surgery, then get online and research the doctor and hospital to find out what patients are saying.

We, the patients of chronic back pain need to start sharing in a format like this one and we need to create our own websites to share information, doctors and experiences.

If you all agree I am on board and I will share all of what happened to me even more. Let's start taking back control of our spine pain or body pain and let's start telling each other and the world what works, who is doing what, etc.

I hope this helps someone and I wish you all the best with your pain.

Thank you, Ellen

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