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Sjogren's Syndrome Support

Feeling Hopeless

#1

I have been fighting fatigue all year. Been to the Rheumy a bunch, and today he took me off of all meds, and said he does not think he can do ANYTHING for me. I just want to cry.

I mentioned tremors, and he wanted to send me away to a neurologist. I have been to my Eliptologist (neurology with specialty in Epilepsy), and she told me the tremors were not neurological. My rheumy told me that she was wrong. He also told me that I need to see another neurologist to get a second opinion. When I asked for a referral, he told me that most patients at his clinic go to another clinic, no specific names.

He told me Sjogren's is black and white, you either prescribe a med, or you don't. That is all. I am so overwhelmed right now. Back to square one. I have tremors, pain, fatigue, etc. He told me there is nothing he can do for the fatigue, and that supplements and food do not affect it.

Also, he can't do anything for my brain fog, or word finding issues.

I know I need a different rheumy, but don't even know where to start?

#2

Hi MamaBear,

I'm very sorry that this is happening to you. The first thing I have to ask is is you have a family Dr who could refer you to a different neuro.

If it's the tremors, I think an opinion from another neuro is in line, hopefully you have a good general practitioner who can guide you.

I was on this kind of merry go round for 7 years, so I can most certainly relate to your feelings. Just rest, give yourself time to get over this blow, and start again.

I am not a Doctor, but I think some of what the Rheum is telling you is just about it. I had been put on an oral med that made me vomit uncontrollably, I couldn't even keep water down, and my Rheum told me that I had many more Meds to try, that might help with the joint damage for PsA, which is my primary autoimmune, but that some people just cannot take them, not everyone can tolerate them. I personally will try anything to keep me out of a wheel chair or nursing home. The immunosuppressants not only slow down the progression, but help the pain and fatigue.

I recently had to go off the Humira, I had a wicked flu that turned into bronchitis over night, what a disappointment that was, as the Humira was just starting to work.

I know there are people here that do not, will not, or cannot take Meds, but I encourage you to do your very best to give them a try. Sjogren's is systemic, eating smart is a good idea, but crash diets can be very stressful, so please take care there. If you are determined, please consult a nutritionist to be sure you are getting what your body needs to function.

I know there are others here who may disagree, but unless you have a food allergy, why go through an extreme change in diet. Try to stay away from preservatives, additives, and buy cold pressed expeller oils for cooking and baking. Eat organic when you can. The health food stores are full of organic nuts, and fruits, whole grain products. It never hurts to eat smart, but it will not get rid of autoimmune. My Rheum insists it's genetic, he practices and teaches.

Just don't give up! There is a doctor out there for you. If you have to, go to the biggest University hospital you can get to to address the tremors, and talk to a another Rheumatologist.

Hang in there, girlfriend. Don't give up!

Wishing you well,

SK

#3

http://www.medcenterworld.com/Sjogrens-Syndrome-Saint-Paul-MN-30329219_Saint-Paul-MN.html

http://mnepilepsy.org/

Here are a few ideas, but surely therer are thousands of options. I just googled Sjojgren's clinic and Epilepsy specialist for St Paul. I hope this is a help!

#4

Hi MamaBear,

Don't you dare give up. That helpless feeling is something we have all shared time and again. It will pass. Sometimes doctors don't realize the impact their words can have on us. We are hanging on every word they say, looking for some hope, some way to improve. Not to take up for them, because some just don't care, but I guess they must get frustrated too when they have no answers. They need to take a course in Compassion. That would be something they could all have for patients. My fatigue comes and goes and so do the pains, tremors, brain fog, etc. I live for the good days and allow myself to just rest, read and do easy things those bad days. Watch a good movie with some popcorn or some hot chocolate and relax. I pray you find a good Rheumatologist that helps. My visit to one two months ago still has me mad and discouraged. Until there is more research on SS and more medicines tested that don't have such bad side effects, we need to listen to our bodies and know that we aren't crazy. One of my problems was a very low Vitamin D level. Have your levels checked for your vitamins, iron, etc... They are easy to remedy and just taking the D has improved my energy. Take care and know others have walked in your shoes and we care about you.

Lucy

#5

Ask around for a rheumy recommendation or a neuro. The tremors are probably the biggest concern. You might be able to get a list from the local hospital or your GP. My rheumie is very nice and well known, but out of all my docs, he might be the least helpful when it comes to creative thinking and I don’t think he has a huge interest in SS. I have many different types of doctors and have, in the end, found this to be helpful. I too had problems with great fatigue and it has i proved. I have one doctor very “into” vitamins,that the others hate and although at times he seems quirky, the truth is he has helped me a lot. I never realized just how much a good diet can help me with fatigue, but it has. It isn’t overnight, though. I have cut out sugar, bread and flour and eat a ton of vegetables now. I am not a vegetarian by any means, but have slightly reduced my meat intake and greatly reduced my dairy intake. I also take a lot of vitamins including a multi, vitamin d3, methyl type b 12, coq10 and fish oil. Honestly, I think these are the basics. Helps with energy and the doldrums. Pain and fatigue alone can cause sadness and it is a vicious cycle. Have also discovered drinking a lot of good quality water between meals helpful. I think mountain valley water in the green glass bottle is excellent. My second favorite is Evian. Dehydration contributes to fatigue. I also discovered my Thyroid was sluggish, hypothyroid, and getting this corrected was helpful. Getting a good nights rest helps me. I take Rhodiola toward bedtime…this reduces cortisol levels. I’ve added a magnesium supplement at night and this helps. Relaxes muscles a little. I also often take a baby supplement of Melatonin…only 1 mg. Of course, SS itself is a big contributor to fatigue…pain issues need to be addressed. For me, and I know everyone is different, chipping away at various causes of my fatigue ( lack of vitamins, diet issues, dehydration, lack of sleep…etc.) has been noticeably helpful.



PS…go to www.iherb.com look up a supplement called “PS 100”. This supplement is used in Europe for ADD. I take it for brain Fog. It is FANTASTIC!!! You can get it at Whole Foods and probably most other natural food stores.

#6

have you heard about low dose naltrexone?when not, you should go to the internet and check it out. go to the ldn-website and it maybe of help for you. when you have further questions, contact me. ruth

#7

I agree with many others. DON'T GIVE UP. Most of us have had similar experiences with doctors. There are treatments out there that can help you. I went on an anti-inflammatory diet. Since I am already celiac it wasn't too great of a change. Just eat proteins, complex carbs and fruits and veggies. Basic common sense stuff. I try to stay away from sugars (although I admit I cheat occasionally). I also eat something every 2-3 hours to keep my blood sugar at a more even level. I feel better when I do this. Actually I found this change has helped control my symptoms along with Plaquenil and fish oil. For me this is a lifestyle change.

. I also take glucosamine chondroitin which helps my body produce more lubrication for my joints. It takes 3-4 weeks before you notice a difference, but for me it makes a difference. My husband has had two hip replacements and three ortho doctor told him if he had been taking glucosamine chondroitin it would have eased his problems a lot. All 3 docs says if you are taking it and still have symptoms take more. There is no upper limit dose. I started out taking 2 three times a day. I have been able to cut back to 2 two times a day.

Please hang in there. For me pray helps a lot. You will be in my prayers. Life is worth living, even when it has severe challenges.

#8

I totally understand your frustration. After my blood test showed off the charts indicators of autoimmune issues (and I also have lots of family members with these issues) my primary referred me to a Rheumy who told me that he could not help me until I lost weight. I was referred to a second Rheumy who interrogated me as if I was somehow trying to perpetrate a fraud. I am still working with her for a final diagnosis (lip biopsy soon), but do not hold out much hope that she will be willing/able to help me. The dry mouth, fatigue and lack of energy and balance are discouraging, but the brain fog makes me the most frustrated. I work as a consultant and my value is correlated to my ability to be articulate, and this syndrome puts me at a huge disadvantage. And while I would love to believe there is a magic bullet, I suspect it will be a combination of getting enough rest, eating right and keeping up on new breakthroughs in the research. It is really hard when you have a silent disability that is not visible to others, but I cope first by trying to show compassion to myself, by forgiving myself for needing to rest when others might have more energy, and then by forgiving others who just don’t understand.
I would definitely suggest looking for another physician who might be a better fit for you. It may take some time, but I believe you will find somebody who not only hears you but also listens to you. Keep your chin up!

#9

I hope you can find a physician who will listen and hunt for answers. My newest doctor found thyroid issues and adrenal fatigue. The adrenal fatigue causes tremors, which is opposite of what I would have guessed. I would have thought excess adrenaline would cause tremors, but since I started the adrenal support supplements the tremors have dimensioned a great deal, and extra sleep helps contain the remaining tremors. Just wanted to share to encourage you to keep hunting. And to maybe think outside the western medicine box.

#10

Thank you, Kaz. First time I’ve heard of any concern of any kind, but I recognize this is always a potential possibility and should have included to check with the doctor. My husband takes it as well and we have both found it helpful w/ref to brain fog. Esp. since I take the dreaded Topamax aka Dopamax, this supplement has been very helpful for me.

#11

Here is some info from the cleveland clinic on adrenal insufficency

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/endocrinology/diseases-of-the-adrenal-gland/Default.htm

#12

Fibromyalgia can also cause extreme fatigue

file:///C:/Users/Susan/Downloads/2010_Preliminary_Diagnostic_Criteria.pdf

#13

Just keep in mind that I'm not a Doctor, Mamabear!

#14

Mamabear,
What you’re going through sounds very familiar. I had tremors in my hand and neck when first diagnosed. It was a scary time for me with very little suppoet from doctors. My GP sent me to see a neurologist to rule out MS. That was over two years ago. I still have the tremors but also internal shaking and other neurological symptoms. These symptoms can be very difficult to deal with. Hang in there! You are not alone. There is a doctor out there who will investigate your concerns. Just hold on and advocate for yourself.

All the best to you

#15

Kaz…re Topamax…I have deep conflict about this drug. I have lost track how long I’ve been on it, but it could be about ten years more or less. When I first went on it, I probably lost about 5 pounds very easily. I was thrilled. My doctor started me on a low dose and I relatively quickly went up to 100 mgs. This was for very bad migraines and it helped. However, I could not remember ANYTHING! It was frightening. I couldn’t recall the names of people and I remember going out to dinner with my husband and just sitting there looking at him and barely able to respond to anything he said to me. I also recall having difficulty driving anywhere because I couldn’t recall how to get to places or how to get home. Eventually, we lowered this medication to 50 mgs. As we lowered the drug, my memory improved and the weight went back on. At fifty mgs. I don’t find it helpful with reference to weight loss…it is neutral. My memory is still “off,” sort of foggy. I take a Tricyclic off and on for facial nerve pain and the fogginess worsens with this
med on top of Topamax. I take Gabapentin in a compounding cream … Not sure about the side effects associated with that. Somehow, I suspect my meds and age (menopause), and low thyroid has made me gain weight a little easier than typical. Today, weight loss is a bit of a struggle. Reduced calories and healthy eating works best for me. Even if it meant less migraines and less weight, I would NOT take more Topamax. I have found my happy middle ground at 50 mg. For me, it is a helpful but strange drug.

#16

I will read your attachment ASAP…but had to reply, Kaz. I LOVE that book. Sadly, I loaned it to someone and, of course, never got it back. One of many things I like about it is the idea of the “over flowing barrel.” Holy crxp! This theory answered so many of my questions. Why, for example, could I eat chocolate one day and on another given day, it would give me an instant migraine? WTH? The guy is a freakin genius. So, I’m a “migraine person.” My barrel at any given time is 60% full. If I’m premenstrual (back in the day) , the barrel is now 80% full. If I argued with my daughter, it’s now 95% and if I eat chocolate???which is a bit of an irritant…voila! bingo! The barrel overflows and I’m begging for Imitrex STAT! I had to explain this to one of my doctors who just sat there quietly listening. It is sooooooo genius. I don’t recall all he said about diet, except about eliminating your problem foods, of which I have many. For examples, I will not ever ever ever touch a freakin banana, even if you paid me. I ate home-made banana pudding once and ended up in the ER with the worst migraine EVER complete with vomit in my hair. Nope, won’t touch a banana for anything. The diet I’m trying for my SS is helping with everything, KAZ. I suspect it has something to do with inflammation. Sometimes I’m weak and cheat, but not for long as I pay dearly with so many health issues sounding off. I am amazed how much diet helps me. I’m fortunate that one of my docs is studying Functional Medicine. Takes frequent seminars. He is one of the very few of my docs that sees how this influences the body. The others hate him. Have you read Terry Wahl’s book?

#17

I really suggest not only do get a second opinion from a different neurologist but I suggest you go to a second rheumatologist Sjogren’s is not always black and white because most of the time of autoimmune diseases go along with Sjogren’s

#18

HI everyone...

I went to the PCP today, and she is wonderful, and asked for referrals. She gave me an internist at the Mayo clinic, and another Rheumatologist at the University of Minnesota. So I am going for a 2nd opinion. She also took some blood for my vitamin D level, and is testing me for Celiac disease. That gives me hope, at least for some more answers.

My work will be posting my job on Monday, as my FMLA is exhausted. My boss left me a voicemail saying that he overnighted a letter. He said that this is (first and last name here), from (company name here). I've been working there for 10 years, and yet he thinks that I don't know him? WHATEVER.

I'm also going gluten free. We will see how that helps. I've been putting flaxseed, hempseed, and chia seeds in my smoothies, and that is wonderful.

She also suggested for me to look into the anticandida diet. Have not researched it yet, will do soon.

Thank you for all of the replies, I need to take notes on this.

Be well,

Mamabear

#19

Hi Mamabear,

Glad to hear that your PCP is referring you for another opinion, and I hope you get some answers.

#20

Hi MamaBear. I'm sorry to hear your FMLA is wiped out. Amazing how impersonal those letters are…. but I am glad you are feeling on the right track with docs and your diet. Please keep us posted on how it all goes.