Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
Hi all,
I used to think that my Sjogrens was "just" dry eyes and dry mouth. After all that is EXACTLY the words 3 different rheumy's used to describe it. Also my kidney doctor and several other doctors including the ER ones. However, it is getting more severe and I bought a book on it and am finding out how it can affect you on the inside as well.
I am wondering about Sjogren flares. The other day I went to my rec center and I walked a half mile on the track. I really put myself into it and I was breathing so hard, perspiring a lot and very sore. I knew I had probably over done it. Should have done a 1/4 mile because I am totally just beginning after a very sedentary lifestyle for years. Well, I came home and took my blood pressure. It was 156/104 and my pulse was 111. Well I am currently taking 4 meds for blood pressure because my blood pressure is hard to treat. So there is no way my bp should have been that high. I re-tested and it was the same. I lay down on my bed just to relax and fell asleep for about an hour. I woke up because I felt so cold. I realized I was actually FREEZING and I went and put on two pairs of socks and got two blankets to cover up with. Even with all of that and a clean pair of sweats on I was still feeling cold. I also developed a severe headache that kept making me think I was going to stroke out because it felt like "a strange headache I had never experienced before".
I was like this for two full days. During this time my husband could only get me to drink a small amount. I would not touch food. The thought of putting anything into my body, be it food or liquid made me recoil physically. It was like I was a rabid dog afraid of water. Honestly that is exactly how I felt. Well after the 2nd day, sometimes around 9 at night I began to feel much better. I saw the crackers my husband had left for me and I ate all of them and then was able to get up and go to the bathroom on my own. The headache was gone but I felt weak and very fragile. I was not freezing anymore and was able to shed all the extra layers. I was wondering if this was a Sjogrens flare. The body temp thing made me think it was possible. Also, I read in my Sjogrens book that physical activity can bring on a flare, especially if you are not used to it. The book so far has not described a flare to me though. If anyone knows I would love to hear about it. Thank you so much!!!
I used to think that my Sjogrens was "just" dry eyes and dry mouth. After all that is EXACTLY the words 3 different rheumy's used to describe it. Also my kidney doctor and several other doctors including the ER ones. However, it is getting more severe and I bought a book on it and am finding out how it can affect you on the inside as well.
I am wondering about Sjogren flares. The other day I went to my rec center and I walked a half mile on the track. I really put myself into it and I was breathing so hard, perspiring a lot and very sore. I knew I had probably over done it. Should have done a 1/4 mile because I am totally just beginning after a very sedentary lifestyle for years. Well, I came home and took my blood pressure. It was 156/104 and my pulse was 111. Well I am currently taking 4 meds for blood pressure because my blood pressure is hard to treat. So there is no way my bp should have been that high. I re-tested and it was the same. I lay down on my bed just to relax and fell asleep for about an hour. I woke up because I felt so cold. I realized I was actually FREEZING and I went and put on two pairs of socks and got two blankets to cover up with. Even with all of that and a clean pair of sweats on I was still feeling cold. I also developed a severe headache that kept making me think I was going to stroke out because it felt like "a strange headache I had never experienced before".
I was like this for two full days. During this time my husband could only get me to drink a small amount. I would not touch food. The thought of putting anything into my body, be it food or liquid made me recoil physically. It was like I was a rabid dog afraid of water. Honestly that is exactly how I felt. Well after the 2nd day, sometimes around 9 at night I began to feel much better. I saw the crackers my husband had left for me and I ate all of them and then was able to get up and go to the bathroom on my own. The headache was gone but I felt weak and very fragile. I was not freezing anymore and was able to shed all the extra layers. I was wondering if this was a Sjogrens flare. The body temp thing made me think it was possible. Also, I read in my Sjogrens book that physical activity can bring on a flare, especially if you are not used to it. The book so far has not described a flare to me though. If anyone knows I would love to hear about it. Thank you so much!!!
You are probably having a flare up. Please take care of yourself and even if you don't eat, stay hydrated.
Something that may be of interest to you-- many people on another sjs board I am on talk about autonomic nervous system issues due to Sjogren's. Several people over there have problems controling their heart rates, bp, etc. You may need to be evaluated for that. If you want a link to one of those conversations just ask and I'll send it to you.
Take care!
Thank you for your reply. I am sorry you crashed so hard the other day. It does sound like we went through a very similar experience doesnt it? I am not glad you experienced it but I am glad to know that it was a flare and someone understands what I am talking about!
Yes!! I would like a link to one of those conversations you mentioned. My doctors are very puzzled about the reason for my very high blood pressure. One day after watching "Fried Green Tomatoes" for about the third time with my husband I took my blood pressure and it was 165/108. Well it was 9:30 pm and I called my pharmacist and she said I should go to the ER since my bp meds were suddenly not working. I went and after a little while it went down. They had given me Valium through an IV and thats what brought it down. The doctor said I was experiencing stress related high bp. However as I reminded him there was absolutely nothing stressful about watching "Fried Green Tomatoes" for the 3rd time with my husband. He agreed and did not offer anything else. Then they told me to see a kidney doctor since I had bp issues for over 10 years and many times it became uncontrolled or my meds stopped working. They thought my kidneys might be messed up. Well they did an MRI and found a blockage on my left renal artery. They thought renal stenosis or another disorder where skin narrows the artery. They did a procedure and found that the MRI had produced a "false positive" and there was no blockage. The doctor told my mom that I had the arteries of a 20 year old. I am 44 and my dad died of a massive heart attack at the age of 49 and was found to be blocked by 97, 98 and 100 percent. They would never have been able to save him. Then they did a doppler to look at my legs for venous insufficiency and found absolutely nothing.
My kidney doctor did not know what to tell me. I could tell he was confused by it all and was just wanting to get me out of his office. I felt bad for him because I could tell he is a young doctor who wants to "save" everyone. Well he told me he thought it was stress related high bp. I wondered how I could be so "stressed out" for 8 weeks because that is how long my bp was stage II high. I didnt say anthing though. I am now on 4 meds for bp and I find it very hard to deal with knowing that at anytime my meds could just stop working. If I knew what was wrong maybe I would have a bit more peace and be more prepared. Maybe I could hang around to play with my grandkids someday! Thank you for your caring attitude. There needs to be more people in the world like you! By the way when I used to come to this site about 2 years ago I also used the avatar you picked. Maybe we are kindred spirits! Take care and take care of that little boy of yours! I have 2 sons ages 11 and 13. Just 6 months ago my 13 yo said he would always talk to me about everything and that he would never want to grow up. Well now he walks far away from me when we are at his school, he shrugs off my hugs and gets mad at me constantly for everything! ~~sigh~~they really do grow up so fast, hang on to that little one with all your might!
My boys are 5 and 2. I really do treasure these years as I know it's a matter of time before they get big. I live for big hugs and "I love you mommys". LOL
There were several posts about blood pressure spikes and autonomic neuropathy, but I figure these might be the most helpful initially.
http://sjogrensworld.org/forums/index.php?PHPSESSID=cc2e1bfbfbd9d0c93d013f8c2a2ca26e&topic=13302.0
http://sjogrensworld.org/forums/index.php?PHPSESSID=cc2e1bfbfbd9d0c93d013f8c2a2ca26e&topic=12839.0
http://sjogrensworld.org/forums/index.php?PHPSESSID=cc2e1bfbfbd9d0c93d013f8c2a2ca26e&topic=6103.0
http://sjogrensworld.org/forums/index.php?PHPSESSID=cc2e1bfbfbd9d0c93d013f8c2a2ca26e&topic=11229.0
http://sjogrensworld.org/forums/index.php?PHPSESSID=cc2e1bfbfbd9d0c93d013f8c2a2ca26e&topic=11141.0
Sjogren's is such a confusing disease. It can do a lot of damage.
I admire you for going to work out. I want to get back to it myself someday.
You feel better and I hope these links are helpful!
My theory on flares are if it looks like a duck and quacks like a duck, it's probably a duck. I have fewer since I've been on disease modifying medications for nearly 13 years now. They have reduced my ANA and other Sjogren's blood markers, so I feel much better and have fewer crashes. But when I push too hard, whether it's just too much for one day (like recently when we had to move a bunch of stuff in our garage to get ready for the installation of a new heating and cooling system) or a whole week where I stay up later working on some project...it isn't a matter of whether I'll crash and burn, just when will it happen. Those weeks I often will end up in bed very early by Friday night and spend a lot of the weekend in bed.
Of course with small children you can't do this, so you will have to learn to pace yourself a little better. If it's any consolation, I'm in better shape now than I was 20 years ago.
When I began my exercise program, I started with gentle stretching and slow-paced walking. Once you improve your stamina, you can add more.
I just have to avoid exercise in warm weather. I ended up with heat exhaustion by walking for about 30 minutes with my friend at work on a day were the temperature was in the high 60's. I wore my Panama hat, my sun protection shirt, and hydrated on the walk. It was over two hours before my burning dry cheeks began to sweat again. Needless to say I don't do that any more. I have a Nordic Trak that I use in the morning when it's cool, and then jump in the shower to avoid overheating. Much easier on my knees and I can ramp up gradually to add more miles over time.
Good luck!
Thank you for the very informative links!! I plan to call my nephrologist today and let him know what I have learned. I also plan on going back to see my Physician Assistnt. I had to quit seeing him awhile back due to insurance. I do think they may take my insurance again. Even if they dont I am still going to see him and just pay the 15%. This PA is the one who found my Epstein Barr Virus years ago and totally undertands how I am going to have AI issues.
I have seen 3 rheumies about all this and 2 of them have told me that they can tell for sure that I have dry mouth by looking. One of them sent me to my opthalmologist and had them do a couple of tests for dry eye and yes I do have it. Well I am supposed to go get a lip biopsy for the dry mouth before they can actually diagnose. The way they are is if it does not show up in a test then you do not have it. The 3rd rheumy said he tested me for SJogrens and I tested negative. I could not stand his condescending attitude. So basically I am going back to my PA who KNOWS I have Sjogrens. He often tries to "milk" my salivary glands for me. My left one has been blocked for some time now. Anyway, thanks again. You will never know how much you have helped me! Also dont be surprised to see me on your other board. I really like it over there!
I appreciate your help with the exercise issue. You know it is strange how we often do not realize that many things we do in our everyday lives are very much like exercise. For example I can easily spend 45 minutes to an hour going around my house and picking things up and dusting and scrubbing. I will ALWAYS break out into a really bad sweat and I will think to myself "Uh Oh, Im in trouble now" and sure enough I will feel like you know what and need more sleep.
The jury is still out on my BP. tomsmom gave me some great links to a board she visits. The people there seem really nice and well informed. Many of them have low BP but a large amount of them suffer from high BP and it comes and goes. The autonomic nerves do control ones BP and also their pulse. I took my bp 4 times in a row today with one minute in between the readings. I have a good cuff that I bought about 3 monthsago. The first reading was 161/96, the 2nd was 152/92, the third was 136/87 and finally for the fourth one I used my right wrist, which is an accetable practice. It was 130/83. So you can see how fast my bp changed. That is not the norm for regular folks. This is with me taking 4 different types of meds. I am not going through the change at this time because all of my hormones have been tested. The only hormone I am taking is Progesterone in a cream base. My doctor said it should help me with my metabolism. She said my hormones are fine and I am not yet near the change. My mom went through it around 55 and she also started her period at 10 years old, just like me. I am 44, so I expect it around 50 something. I dont know what the deal is with my bp because I remembered that the same thing happened to me last year at this same time. I am tired of it though, thats for sure! Thanks again!!