Needing help: new, overwhelmed and lost in Houston!

Welcome New Member Checkin
1

Hello everyone!

I've looked through a lot of posts here as I waited to be approved and I'm eager mostly to connect with others who might understand what I'm going through. Right now though I'm writing this at a time when I'm very confused and feeling a little lost. I was recently diagnosed, but my path to diagnosis has been strange (which I know isn't uncommon!)

I'd been experiencing extreme fatigue, low grade fever, headaches and achiness (in joints and otherwise) for years. I got the chronic fatigue/fibromyalgia diagnosis most often. People suspected autoimmune because of my symptoms, but my bloodwork was always normal. Then I developed what was extremely painful neuropathy, but my EMG was normal. I also started experiencing increased sinusitis to the point that I had surgery. Surgery helped a little but my nasal passages were so dry that I would still have a lot of pressure and pain. My eyes became so painfully dry that I stopped wearing contacts. I never thought I had dry mouth but I have continual plaque buildup behind my bottom teeth no matter how often I brush and I noticed I was drinking all the time because my mouth felt "uncomfortable." I also have very very dry skin and it used to be oily.

There was no explanation of the neuropathy or even proof I had it. Fatigue continued to worsen. All of this got so bad I went on leave from work and then short term disability. I will have breakthrough periods where I'm okay, but mostly I have not learned to pace myself and I feel like I'm in one giant flare.

After having a muscle biopsy come back normal (as I have sore, twitching muscles), my rheumatologist suggested a biopsy of my small nerve fibers. She had been instrumental, trying tests no one had tried before. She told me she didn't think it was fibromyalgia and even suggested I go to Cleveland Clinic for answers. Anyway, the biopsy came back positive for small nerve fiber neuropathy.

I had read there are several potential causes and though I knew I may never find out, I wanted to investigate every option I could. My doctor thought there was no need for further testing. I didn't understand why. I'm applying for long term disability through my work so I can finally stop worrying about finances and let my body rest since I'm not capable of anything right now anyway. I asked her if finding out a cause for neuropathy (such as sjogren's) would help with disability and she said no since it's not automatic disabling condition. I didn't understand this since saying "I have proof I have a disease that can do certain things and it's affecting me this way" seems a LOT more convincing than saying, "I have pain and fatigue and other symptoms but I have no idea why and can't prove it to you."

Needless to say, I began to lose faith in my rheumatologist, which is scary when going down this path and hoping for support and help. I pushed hard for a salivary gland biopsy, which she gave into because of my sicca symptoms. To even my surprise, it came back positive! Rheumatologist said I have Sjogren's, but don't make the antibodies. Then she said they just treat the symptoms, like for dry eyes and dry mouth.

I don't understand this when I have such horrible neuropathy that was likely caused by it and I see most people automatically being prescribed drugs like Plaquenil. I felt so relieved I finally had a diagnosis and with all my reading, I see all my symptoms can be tied to Sjogren's! But now I worry my doctor doesn't truly understand it (which is disappointing since it's a major medical center here in Houston), I won't be trying treatments I need to try, and she won't relay my condition properly for disability.

I've contacted the Baylor Sjogren's Syndrome Center, but I couldn't get in until July 15th.

I'm sorry this is so long, but I'm feeling so lost and worried about all of this. I guess here are my questions to the group.

- Can Sjogren's alone really cause all these symptoms I have? Neuropathy, debilitating fatigue, joint pain, brain fog?

- Does ANYONE know someone great in Houston (I'd even go to another city in Texas!) who's good with less standard cases of Sjogren's and very knowledgable?

Thank you so much in advance, I look forward to getting to know you all.

Candace

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Sorry that you're dealing with all this, and having to push so hard for treatment. It sounds like you've fought your case really well so far, and done your research, so that's a great start. For the first question- definitely yes! If you have time, you can search through the past discussions for those topics, and you'll find they come up ALOT!

I'm UK, so can't help with question 2, and hopefully other more 'experienced' members cab help you with that, and more about the treatment options open to you. We've also had discussions on here about applying for disability- that can be difficult and take a while, apparently- it does seem crazy given the limitations on what you can do with this AI disease.

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Thank you, Jules! I see a lot of people say they have Sjogrens AND fibro, which explains a lot of the pain, but I really feel like my pain comes from joints (which I'm assuming is from the Sjogrens) and the neuropathy. Do you know if a lot of the achiness be Sjogrens and not fibro?

I'm specifically applying for disability through my work and people have said it's easier than social security, but I've been denied once. I hope to one day work more on a project basis or freelance once I'm more stable because I'm only 35 and there's a lot of things I wanted to do with my life! Right now it's frustrating me because it seems many people just see it as a dry eye/dry mouth condition and don't understand how much it can disable people.

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I’m sorry that you’ve had to go through so much with the diagnostic process. Yes, all of the symptoms that you describe can definitely be caused by Sjögren’s. There are medications that can be used both for symptom control and for disease control. Plaquenil does seem to be a fairly typical starting point, and can really make a difference with fatigue. Meds like plaquenil and other disease modifying meds can help out with the joint pain as well. There are meds like evoxac which can increase saliva production as well as some tear production. There are specific treatments such as ductal plugs for eyes, biotene for dry mouth, etc.

I don’t see any reason why you can’t talk to your doctor about starting treatment while you wait to see the docs at the Sjögren’s clinic.

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Hi Candace,

I am curious as to how your small fiber neuropathy manifests itself? Do you have pain in your legs, for example? I have not been diagnosed but have all the symptoms of Sjogrens which started with pains in my legs mostly at night. It is a burning pain. That is my worst symptom. I had that for about 5 years when the mouth dryness started. It would all happen so suddenly. One night I had pain in my legs and from then on I had it every night. The same with dry mouth. It happened one night and now it is every night.

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Thanks for the reply, Stoney! My doctor doesn't know I'm going to try the Baylor Clinic as well. I just feel unsatisfied with how she's been approaching this-- she hadn't really seemed to think even getting the lip biopsy for a possible diagnosis would be worthwhile and I feel like I have to push her to let me try plaquenil. That makes me nervous considering I have neuropathy from it and don't want to get quickly worse.

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Shirasongbird,I think fatigue and some joint pain might have been my first symptoms, but the neuropathy was by far the worst and why I really pursued a diagnosis. It started in my calves and felt like cramping and burning. I also have tingling in my foot that never goes away. Over the course of a few years, the pain/burning has moved up my legs into my thighs. After more time, I now have odd little tingles/burning in my arms and some pain, but my legs are by far the worst. The pain is always worse at night. I thought I was crazy since my EMG was normal, but the small nerve fiber biopsy wasn't too bad and gave me those answers.

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There are medications which can help with nerve pains too, like Gabapentin/ Neurontin, Lyrica, Amitriptyline and Nortriptyline. They are low doses of either anti-convulsants or antidepressants, don't be put off by that, but have been found to be effective for nerve pains. Here's a link to explain a bit more: http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/basics/treatment/con-20019948

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Thanks, Candancing for your response. I wonder what causes the pain? what happens to the nerves? and I wonder why the pain is worse at night?

I eat a plant based diet but so far I don't think that helps. Dr. Greger who just wrote a wonderful book called How Not to Die and also has a great website called Nutritionfacts.org hopes to write something on Sjogrens. I hope he does,

Shira

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Shira, I've just started researching all of this, but the way I understand it, the lymphocytes attack different parts of the body. In Sjogren's I guess it's mostly moisture causing glands, but it can also be other parts. For those with neuropathy, the lymphocytes attack the nerves. It was having neuropathy that made me research possible causes. Some are causes by autoiummune disorders like Sjogren's (or Sarcoidosis, celiac disease, etc.), some because of diabetes, and some they don't know the cause of. I'm guessing in all autoimmune disorders with neuropathy, it works that way, which I'm hoping means if I slow the progression of the disease, it could help the neuropathy from getting worse. I don't know why pain is worse at night, although my pain is usually worse when I'm really still and I'm more aware of it. Also I've been on my feet a lot of the day, so it feels like it's all settling in. My one doctor said it's like "having restless leg syndrome on steroids" but I don't know how accurate that is. I'll have to check out Dr. Greger's works! I used to be completely vegan, then vegetarian, and now I do eat fish. I'd read a lot about how important the omega 3's and I was really protein deficient. I believe strongly in nutrition, so I'm hoping to try an anti-inflammation diet. I see some people have success with paleo, but that's tough when one doesn't eat meat and I'm not really willing to go back to it aside from the fish.

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Candancing, please let me know what you learn about an anti-inflammation diet. My husband and I just started taking Tumeric ( curcumin ) in pill form and supposedly with pepper it works even better as an anti-inflammatory. At this point, I am willing to try.

In Dec 2014, I had a heart bypass operation and about 14 years ago I had breast cancer. It is hard to believe this happened to me since I eat so well and exercise. Maybe it is stress. Those are supposedly the three factors involved in disease besides heredity. I went to heart rehab for 12 weeks and still exercise 30 minutes a day on treadmill and stationery bike. In summer I garden all the time too. At least I didn't die from the heart and cancer problems. My sister did die of breast cancer. The doctors all say, oh, that should never have happened to you with your life style, but it did. I am 75 years old. I did chemo and radiation after the breast cancer diagnosis and then took Tamoxifen and Femara for 10 years. I wonder sometimes if all that chemo for breast cancer might have given me Sjogrens syndrome. I wonder if there is any research on that. Right now I don't take any medications.

Here is a book I am reading which is helpful to deal with symptoms:" Full Catastrophe Living; Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness" by Jon Kabat-Zinn. I had read about this author in Time magazine and got interested

12

I’m in agreement with everyone else here. Sjogren’s can, and DOES, cause everyone of your symptoms. My own autoantibodies are positive so I’ve never had to have a lip biopsy. Like you, my neuropathy started before any of the sicca symptoms, but I never dreamt the two could be connected. Took me two neurologists, but second one agreed that I had small fiber neuropathy (first one insisted the sjogren’s causes large fiber neuropathy only and since my NCS/EMG were fairly normal told me it was a pinched nerve ) Although the second neurologist agreed it was small fiber neuropathy due to the sjogren’s, He didn’t feel it was necessary to do a skin biopsy since it wouldn’t change things. I’m on gabapentine for the nerve pain.

On another front, we recently took my daughter to John’s Hopkins neurology for neuropathy from Guillain Barre syndrome which has only worsened, not gotten better in time, although her nerve conduction studies have now returned to normal. Dr was quite sure it was non length dependent small fiber neuropathy which was also attacking her autonomic nervous system. And he thought the most likely culprit was sjogren’s! ( ANA is positive but not SSA or SSB.)Surprisingly, the skin biopsy came back negative and we’re back to square one in her mystery disease!

At any rate, when the neurologist at Hopkins was sure it was small fiber neuropathy, he spoke of treating the underlying autoimmune disease aggressively with things like IvIG infusions to try to halt the progression of the disease. If you look back at some of the recent posts about a LEAP article, they’re making great strides at Hopkins treating the disease based on the specific results of the lip biopsy.

Last thought: I have been on employer-based disability for 20 months now. It appears that my rheumatologist agreeing that I can no longer work is sufficient in the state of NJ. Is the same true with your disability? Have you seen the forms your rheumatologist has returned to the disability co?
Sjogren’s even has its own category for social security disability and is recognized as a true disability.

Liz

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Hi Candace
I live in Houston too. I see Dr Holly Jones, I will because going to a second appointment but my bloodwork is usually normal. I’ve always had that problem,in order to find out that I had Sjogren’s syndrome I had to have a salivary gland test done. I’m always tired :frowning:

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Thanks Jules, for the info on neuropathy drugs! I'm considering taking something for it, but I also want to be doing something that helps the entire disease process and sometimes, as debilitating as it is, I feel like my neuropathy is sort of an indication of how badly I'm doing. But if I was also on Plaquenil or something, I think I might want to.

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Shira, I definitely will! I'm reading a book about it right now but I'm seeing some conflicting information out there-- some say you need high protein, others say lower protein. I know low protein has affected me negatively, so I'm worried about that. I was thinking about trying the tumeric-- any difference yet? I'm so sorry about your other health troubles, I do think trauma that's either physical or emotional can bring out these autoimmune disorders. I think for me, it was extreme stress.Thanks for the book recommendation as well, it sounds like what I could really use right now!

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Liz, a lot of what you wrote really interested me. I feel like up until now, I was going through something similar to your daughter-- a difficult path with not a lot of answers. Even though I'm in Texas, I was really thinking about going to John Hopkins because I have a friend in Baltimore to stay with. Was it overall a positive experience, even if there weren't answers? I've been intrigued by the IViG, but my doctor says it's very expensive and often not covered by insurance since it's not indicated for this. This confuses me since the literature I read says it IS indicated for neuropathy related specifically to autoimmune disorders. This is partly why I'm dissatisfied with my rheumatologist-- I've been concerned by a lot of what she's said. Did your daughter ever get the salivary gland biopsy? I have none of the blood test results, but a positive lip biopsy.

As for disability, when I first applied, there was no diagnosis in addition to small nerve fiber neuropathy. I'm hoping so hard that'll make the difference since neuropathy is more of a symptom. Though it can be so debilitating, I'm confused why it wasn't even enough. I didn't see the forms my rheumatologist filled out, BUT the reply from the disability company indicated that in the physical capabilities assessment, she said I could do things I CAN'T do (like stoop, crawl, reach repeatedly, carry up to 20 pounds. Once I was denied, I complained to her about it and she said they were estimates and if I could EVER do them. Well, I looked at the forms and it doesn't say ever, it says 0 hours and then up to 2.5 hours, etc. Now she said well then you should go get a physical capabilities assessment test. This isn't covered by insurance and it's frustrating because I feel like if she had just honestly answered it (and maybe even asked me), I wouldn't have to consider it. But I'm also not sure if simply having the Sjogren's diagnosis will be enough this time. I had no problem with short term disability. Did yours go into long term?

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Ana, I'm always so tired too! What did Dr. Holly Jones say about your labs? Does it seem like she's still going to treat you the same way as if you had positive labs? I see good reviews for her online so I might give her a try, as long as it seems she's good with more unique cases of Sjogren's. Do you have other symptoms besides fatigue too?

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Thanks for the detailed information but I want to add a slight adjustment. Plaquenil is used largely for fatigue and joint issues. For those that it does work for (me included) it can bring a huge amount of relief in daily functioning due to lessened fatigue. I had never heard of it being used for skin but ya learn something new everyday.

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Hey.... I am on high protein also. In my case there aren't additional physical issues from having them. Actually I have red meat a couple times a week also because i run anemic, etc. For me, staying away from heavily processed foods, sugars, etc helps immensely with joint issues though. I am also one of the lucky ones that isn't affected by nightshades either. It really is a personal thing as to diet and what is going to work best for you as this disease is a weird one. LOL. The only suggestion I would make would be to make sure you don't add or subtract foods too quickly or you will not be able to decipher which ones are good or bad for you.

candancing said:

Shira, I definitely will! I'm reading a book about it right now but I'm seeing some conflicting information out there-- some say you need high protein, others say lower protein. I know low protein has affected me negatively, so I'm worried about that. I was thinking about trying the tumeric-- any difference yet? I'm so sorry about your other health troubles, I do think trauma that's either physical or emotional can bring out these autoimmune disorders. I think for me, it was extreme stress.Thanks for the book recommendation as well, it sounds like what I could really use right now!

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I just started it yesterday, so fingers crossed I'm one of the ones it works for! I think for now I'll also stay on high protein since a lot of my labs improved once I started doing that. Thanks for your insight!

EnjoyLife said:

Thanks for the detailed information but I want to add a slight adjustment. Plaquenil is used largely for fatigue and joint issues. For those that it does work for (me included) it can bring a huge amount of relief in daily functioning due to lessened fatigue. I had never heard of it being used for skin but ya learn something new everyday.