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Jody: Fibromyalgia/Difficult Diagnosis

Then the rest of the pain wakes up and my day begins.

Kerikeri Waterfalls for Jody by Sherrill Knaggs, ISN Artist Each day begins the same. Before I even open my eyes, I feel the pain in my hands. I swallow and feel the pain in my throat. Then the rest of the pain wakes up and my day begins. I feel like I am drowning in a sea of ambiguity.

I was in the midst of an around the world expedition when I fell ill. I actually was sick often through the trip. I had difficulty acclimating to the heat and preferred air conditioning. In Kenya, I was bit by an unknown insect and my hand and arm swelled up. In Sudan, I was on intravenous (IV) for heat stroke and food poisoning. And in Thailand, at the end of March, it all came to a crashing halt.

I was in a scuba diving course and was very cold in the water. My instructor said she had Raynaud's disease, explained what it was, and offered me a spare wet suit. It helped a lot, but a few days later, I presented with signs of decompression sickness. After three days I was treated, twice, for a total of ten hours in a hyperbaric chamber. I came out still with symptoms; blurred vision, tingling in both hands and feet, and vertigo. So I was to fly to Bangkok and see another doctor. The day I was to head out, I developed red blotches and tiny blisters on my hands. They itched so I got a shot of prednisone and off I went.

In Bangkok I saw a myriad of doctors at a top notch hospital. I could not see clearly out of my glasses and three opticians were unable to help. I saw the hospital ophthalmologist, who (without dilating my eyes) said I had swollen optic nerves. He said, "You need a CAT Scan. Something is wrong in your brain." I attribute his tactless approach to English not being his native language. My CAT Scan came back normal. MRIs showed bulges to the disks in my neck. The doctor thought this explained my vertigo. The dermatologist said my hand symptoms were due to urticarial vasculitis. All labs came back normal except one; my ANA was positive at 1:320 with a speckled pattern. No explanation was given to me as to what this meant.

I kept asking the doctors about fibromyalgia as I knew about it and figured my problems were that, but they refused to listen. They threw out vasculitis neuropathy, with no explanation as to what that meant. I was released from the hospital and put in physical therapy. I kept my room air conditioner on at sixty-two degrees and was comfortable. I discontinued therapy because of pain. I saw another doctor several days later and she redid my MRIs, but with contrast. At this point my neck and shoulder blades felt desensitized. My vertigo was worsening.

The MRIs showed inflammation to my cervical spine, the nerves and nerve roots, and four cranial nerves. The doctor said it was post infectious immune mediated with no further explanation except that doctors in the United States did not know what this was, but she could treat it there. I was given a three day methylprednisolone pulse treatment, with no information about the side effects. I was given several medications for fibromyalgia, which the physical therapist said I had, and a two week tapering of the steroids. The doctor said not to worry, I did not have systemic lupus erythematosus (SLE) or multiple sclerosis (MS), so I would be fine. And a day later, the twenty-sixth of April, with 'slamming into walls' vertigo and four hours of sleep, a doctor flew home with me.

I eventually saw a neurologist when I got home who gave me more prednisone to taper me off. He said he thought I had a connective tissue disease (CTD), maybe vasculitis, and that I needed a million dollar workup done. I did not have health insurance, I could not show up for all these tests a few days into a new plan. I was feeling better and stopped taking my medicines. I thought I would be fine. He suggested a free clinic that he volunteered at and said I could be seen there.

I applied and was accepted into this health clinic. On June twenty-eighth, one day after the general practitioner suggested I had Behçet's disease, but was in remission, I started to relapse. I felt like I had arthritis in my hip and hands. My neck was going numb and it was hard to breathe deeply. I looked up Behçet's, but it did not really fit. I spent the fourth of July in the emergency room. My erythrocyte sedimentation rate (ESR) was 17 and I was admitted for chest pain. The next day another neurologist saw me and said I needed a full workup and that he too thought I had lupus or a connective tissue disease. I had to leave the hospital as I was paying out of pocket and could not afford to stay or have any more tests done.

I spent the next week sleeping, hardly eating, and feeling lousy. What energy I had was used on the computer reading up on everything I could. I thought I had thoracic outlet syndrome. I made an appointment to be seen by a local dive doctor, perhaps this was residual decompression sickness. Maybe it was a fibromyalgia response to so much prednisone, or going cold turkey off my medicines.

My right hand, I noticed, would always get cold when I was on the computer and I figured it was from resting on my wrist using the mouse. I read up on lupus, MS and vasculitis. Each minute that passed I would become entrenched in fear.

I then went to the county hospital to get into their rheumatology clinic. My ESR was 5. My ANA was 1:160 homogenous and speckled. The doctors there did not seem to listen to my complaints and said I had no clinical signs of lupus or any connective tissue disease, just fibromyalgia.

The dive doctor said, "You do not go diving and come out with lupus." He did not want to treat me until he knew of the results of follow up tests.

In August, both hands were getting cold when I typed. I had a sore throat that no one checked. I was fatigued. The whole fibromyalgia story. I went to a chiropractor who did some adjustments. I stopped going when she adjusted my neck and left me with a nonstop pulsation stemming from the back of my neck into my head. It felt like my arteries were pounding; a pulsation or a vibration, a fast-paced heartbeat. I faded and then came back. Now it feels like a tugging. My scalp gets sore and my eyes bug me.

I saw an infectious disease doctor who said it all seemed post infectious and that depending on new MRIs, I might need a spinal tap.

I went to a neuro-opthalmologist who said he saw nothing neurological that could explain my new symptoms. I saw stars and floaters when I was outside. I told him I went to the optician because I had bloodshot eyes for about a week and he tried to dilate my eyes but they wouldn't dilate with the drops he used. He had to use other drops. Conversely, my eyes stayed dilated for two days after seeing the neuro-opthalmologist. He said it seemed fibromyalgia related and I needed a pain management program and physical therapy. He also said he thought my MRIs were over read in Thailand and he did not agree with the cranial neuritis.

I had my MRIs redone privately because the appointment I got at the hospital was and still is for next May. The MRIs appeared stable in comparison to previous ones. It showed maybe some increased signal in my spine and a vascular anomaly that was there before. The doctor did not appreciate the findings of neuritis to certain nerves in my head. Basically, it seemed fine. The neurologist said the pulsation could be irritation to the tiny nerves in my neck unseen in an MRI.

But my hands were still annoying me. They would get red speckled all the time. They were generally cold, especially when I typed. My feet seemed cold too, but they have always been that way. In the mornings, my hands hurt and felt rubbery when water touched them. I was taking several baths a day to alleviate muscle pain and the pulsation in my neck and I felt I had dishpan hands.

I was getting reflux at nights. And my hips really hurt. I was in physical therapy and could not handle the water class. The water, though it was ninety degrees, bothered my hands and they would prune easily. I was getting tiny blisters on my fingers and thought it was Raynaud's. My wrists hurt too much to do the exercises.

I started to wake up with numb hands and I panicked. Then I read up on carpal tunnel syndrome and this seemed logical since I was on the computer so much. I was told by a few doctors it could all be stemming from my neck and shoulders.

The dive doctor said he wanted to treat me and thought this arthritis pain I had was residual decompression sickness. The dive insurance company from Australia declined coverage since I have been repatriated, an exclusion I was never privy to and still contest with them.

I have since been back to the neurologist, who disregards my cold red hands and says my problems are rheumatological and he thinks I have vasculitis.

Two weeks in October, my best friend was visiting from New York. I had been waiting months for this visit and was very disappointed to be so fatigued. One day I took Bromelain as an anti-inflammatory, then some Motrin for a headache and we headed out for a day at South Beach. We had sushi for lunch and my stomach began to bother me. When I got home and went to the bathroom there was blood. I spent five hours in the emergency room and was admitted with pancreatitis. There was no explanation as to what caused it, maybe the NSAIDs. I told the emergency room doctor it hurt when I ate. He asked for how long. I said since June.

I argued with the attending doctor to check my ESR just to see if it was high. I told the gastroenterology doctor that I had a sore throat and reflux, but no one checked my throat. I had a sigmoidoscopy done. I had had one last year before I left on my trip because I have irritable bowel syndrome (IBS) and they found internal hemorrhoids, ergo the blood. I said I have IBS and get an upset stomach easily. I told him about the reflux. He said nothing.

After two days on IV and liquids only, my enzymes went down, my ESR was 6, and I was released with no further instructions other than to follow up with my general practitioner and buy Anusol inserts. I left with slight anemia and that was that.

Three days later, after attending a wedding and snorkeling, I was fine in the water, I had a terrible sore throat and my voice was shot. I spent seven hours waiting to see a doctor at an urgent care clinic and she said she thought it was from my post nasal drip and from reflux. I sleep on my back because my shoulders bother me. She said to sleep propped up against pillows.

Yesterday I went back to the rheumatologist. I wanted to discuss my symptoms and how I felt like no one was listening and I am afraid they are missing something. Last week I discovered this web site and started to panic seeing my symptoms in one arena. I would not question it being fibromyalgia if I was not ANA positive. With that though, anything goes.

My parents took off work and went with me and a general practitioner saw me because the rheumatologist was backed up with other patients. So there I was with another doctor who had no specialty in rheumatology. Every doctor I see seemed to pass the buck to the next and I could not even discuss it with the doctor I wanted to. I was in tears as soon as he asked how I was. But he seemed genuinely concerned and told me to start from the beginning.

Slowly, I explained my symptoms and how I have symptoms that are going untreated. I showed him the page I printed with CREST signs. I said I have reflux and I have Raynaud's. My parents interjected that I sit in the house with a sweatshirt on. I said I have little spider veins on my face that I never noticed before. And the same time I developed Raynaud's, I was waking up with numb hands and thought I had carpal tunnel syndrome. I told him the neurologist would not do anything because I am seeing a top neurologist in December, and he wants to wait and see what that doctor says. I said that my index fingers and thumbs get dried out and cracking like I have dishpan hands.

I told him that I was a copywriter and a travel writer and can't work. I have been sick for seven months now and I am scared I have something horrible with no cure. He noticed the scars I have on my legs from mosquito bites and I said I have had them since I was eighteen. If I scar like this on the outside… and I trailed off.

He listened and listened and I decided I wanted him to be my general practitioner, since I did not really have one.

The rheumatologist came in and said she understood my concerns but right now there's no clinical suggestion of scleroderma. The SCL 70 test was negative. She said my ANA does not have an Anti-Centromere pattern. I told her that SCL 70 is not positive in everyone, and I do have symptoms. I guess it does not matter that my symptoms appeared more so after the labs were drawn in July.

She said she knew it was frustrating with people in the beginning because the symptoms I have can appear in all connective tissue diseases and we have to monitor it to see how it progresses, if at all. They set up electromyogram (EMG) tests for carpal tunnel and gastrointestinal tests for reflux. Again, since it is public health system and they are overwhelmed with other uninsured people, the tests aren't until next March.

She said, "You have been doing plenty of research and you know there are no real treatments or cures for scleroderma and it isn't like you want a diagnosis." I would not be able to get insurance and it would not change the symptoms or pain factor. She said I had significant fibromyalgia which has all these symptoms as well and that it is her job to monitor me and follow the progression. She said what I really need is proper sleep and suggested I try an antihistamine to help me sleep.

Last night I took two antinflammatories, put on my wrist splints and slept. This morning I woke with my hands hurting. My throat was sore. But I forced myself to walk a mile on the treadmill. I felt okay to have cereal for breakfast. An hour later I was exhausted again. I felt food in my throat. When I took a shower, the water bothered my hands and my fingertips still feel thick and dry. And as I type this my hands get ice cold and I start to cry again in despair because I am lost.

I can't get work. I cannot get health insurance. I cannot seem to get better. The only thing I can seem to get is upset. Each night I go to sleep and think, tomorrow I will be back to normal.

~Update 4-23-03~

Just to give an update since I posted my saga. I have had many tests, some of them more than once. My ANA is negative. I have gastroparesis and have mild reflux/dysmotility which is seen in gastroparesis.The peristalsis is normal, but the waves are uncoordinated and sometimes go into spasm, especially if I drink something cold or hot.

My doctors insist this isn't scleroderma, but is idiopathic. My manometry yielded nonspecific symptoms with no etiology (cause) to explain it.

My fingers still get cold when I use the computer. The fingertips generally get pinkish or red. They do not turn white or blue, they just get ruddy and the doctors say that it isn't typical Raynaud's. They aren't sure if it is brought on by thoracic outlet syndrome or neck problems or what. These symptoms annoy me most. It happens every day, several times a day, whenever I type, which is a tough problem for a writer. I can change the color of my hands and temperature by moving my neck and shoulders around.

I see a neurologist in a few weeks and will have it all checked. I have ulnar problems but the carpal tunnel test was fine. They never tested my neck though and all my problems stem from my neck and shoulders.

I am a lot better than I was a year ago. I still have the gnawing fear that this is all related, turning into something terrible, and my doctors just don't know any better. But there isn't anything that can reverse things in modern medicine especially when my blood work comes back normal.

The fear does not consume me as it once did. Perhaps because I am occupying my time doing things other than researching symptoms.

I am trying a lot of alternative treatments. I use my treadmill almost every day or do yoga. And I am searching for a job. Life goes on.

My ANA came back positive again. 1:160 mixed. The rheumatologist still claims that she thinks I am a false positive. SIGH.

~ Update 5-18-03 ~

My ANA came back positive again, at 1:160 mixed. My rheumatologist still claims that she thinks I am a false positive.

I am in San Francisco and undergoing a series of hyperbaric oxygen treatments to try to curb whatever is happening to me. I am constantly chilled. My fingers have become icy and bother me whenever I am not in direct sunlight. If I touch something in the refrigerator, they drain of color momentarily and then take on the same appearance as they always have — the fingertips a little pink and the temperature cold. Or the color is completely normal but they are still icy, as well as my nose and toes, too.

I am sick of being sick. I am sick of worrying. And I am sick of doctors who either know nothing, or who just do not want to deal with this. I resent the fact that I am forced to spend so much time researching information, scaring myself while I am at it. I am told I should have more faith in my doctors, that I need to let the doctors do their job, but how in the world can I?

I just have to hold out hope that the HBOT will work and regulate my immune system. I mean if you do not have hope, what do you have?

To Contact the Author

Email: Withheld by Request
Story submitted 10-31-02
Story edited 11-1-02
Story posted 11-10-02
Corrections made 11-12-02
Email address removed 4-23-03
Update submitted 4-23-03
Update posted 5-11-03
Update submitted/posted 5-18-03

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Carpal Tunnel Syndrome
Multiple Sclerosis
SCL 70 test
Vasculitis Neuropathy

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Joe Joe: Morphea

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

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