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Sjogren's Syndrome Support

Isolation is the worse side effect for me!

Hi All,
I have always kept my a calendar of things I did over the years. I like many had signs and symptoms of SS and RA but I wasn’t diagnosed for years. I went from an active working out person to a person who never leaves the house. I used to so enjoy swimming but had to stop due to skin rash it caused. I couldn’t do my job anymore because my hands were swollen and useless. Somehow now my outings are to doctors not lunch dates.
I just wanted to get this out there if others that feel the same way.

It is hard to learn how to deal with all of this. My outings seem to be to the Dr as well. Right now I have a tooth that needs to be pulled. No dental insurance and no money so I don’t know what to do. Do you take any meds for any of your symptoms?

Sorry that you're feeling so isolated... I think a lot of members feel that way at times, and that the doctors appts. rule their lives. It takes a while to adjust to this and to find things you can do. Quite a few members who miss exercise have found that yoga is something they can do- whether in a class or at home, although obviously that won't help your isolation. I guess (it's hard I know) it's about thinking outside the box to things that you can do, trying to stay positive and not think about what you've lost. We're all different so what works for one won't work for all; I can do voluntary work and that helps to get me out, but as it's voluntary I know that I don't have to feel bad about it if I'm not feeling up to it. I don't know what's available in the US, but maybe there might be something which interests you? (I hope this doesn't sound patronising- just trying to think positive- I really, really miss cycling and swimming too- and could spit when I think how many people can't be bothered to exercise, and don't realise how lucky they are to have the health to do it!!)

Hi Kquixtar,

I'm sorry you are going through this. I hear you and totally understand. I used to work out all the time and go on hikes. Now I'm lucky if I have the energy to get through the work day - I work full time with 2 small children, so now I just have to focus on that. I have primary SS and now the doctor thinks possibly Fibromyalgia. Exercise is probably one of the best things people with SS can do, but I can't even muster the energy to do it. When I push myself, I am completely exhausted the next day. What are we supposed to do? How are we supposed to exercise? I also find myself just staying at home - it's so much energy to get out. Were you swimming in a chlorinated pool? Did you try a salt water pool? They say the salt water is better for the skin. You mentioned your hands are swollen - do they also feel hot? Mine are always burning up. Thanks for your post, and I hope you find a way to get out more. I think it would help you mentally as well as physically - but I know it's so hard. Hugs!!!

Yeah, Sjogren’s has completely changed my life too. Medicine helps somewhat…if it wasn’t for the Plaquenil, I would be practically bedridden because of fatigue. I can at least go out sometimes now. But I’m a shell of what I used to be. Before all this started, I was pretty active too. I would ride my bike, I would hang out with friends and go all over the place. I used to be really into photography. On a typical day, I could go up to the mountains with a friend and take a bunch of pictures, then we would go the movies, AND later that SAME night I would develop the film and prints in my darkroom (I prefer using film). I would do all that with no problems. I often worked on my car myself. I was also into astronomy, and I would go on star parties with other people out in the desert, or I would be up late at night in my yard looking at the planets with my telescope. But now, I can hardly do any of those things anymore. I can’t work in my darkroom late at night anymore because I get too tired, I can’t pick up anything heavy anymore because of joint pain and the fatigue will wipe me out, and if I do go out to take pictures, I can’t stay out too long. Any time I plan to do any activities, I always have to be careful not to overdo it and get myself too tired. And I’m only 38! I was only 36 when I was diagnosed. The worst thing is that no one understands it. A lot of my friends disappeared and just pretty much abandoned me when I first got sick. Before I finally got a diagnosis, I really thought I was dying…I suddenly got tired all the time, I was getting dizzy and getting headaches every day, my joints started hurting, then my feet got freezing cold. And all my so-called friends, some of them I’ve known since high school, just completely ignored me. I guess because I just wasn’t fun enough to be around anymore? When I really needed people the most, they weren’t there. I’m still kind of mad and bitter about it now, I guess.

Yeah, the isolation you feel with a chronic illness can be bad. I never expected that. You’d think that your friends and family would be supportive…but that’s not what happened in my case.

Hello Jules,

I had to reply because I could have written your posting. Everything you said I have said many times before. I went from being a very active RN and "supermom". Now, many days I only get out of bed for necessities. I do even recognize my life!

I not sure where you live but if you can, find a support group. There aren't any near me, 30 miles away is too far for me to drive myself now. But I go on websites and have found an inner strength that had deserted me for many years. My husbamd is also a great help and comfort. I hope you have someone like that in your life too. I will try to write more later but my hands are done!

Take care

Bels

I didn’t even realize until recently that I live a very isolated life. I used work out, ride my bike, hike. I don’t do any of those things anymore. I was attributing it to my age. I have not had an official Sjogrens diagnosis. No lip biopsy, but my ANA is evated and I’ve had dry mouth, dry eyes for years. My dentist is the one that suggested I may have Sjogrens. I am now taking a med for dry mouth- Evoxac. I just started taking it so not sure if it’s helping. My PCP suggested doing yoga as well. I’ve tried it. I just cant seem to stick with it. It’s so helpful to read others suggestions and how they deal with the symptoms.
Thanks, Beth

I'm the same way. I am just grateful when I had to get out and do things while my kids were growing up I could. I don't want to make plans anymore because I never know how I'm going to feel. I feel like I've aged 15 years in the last 2 years.

Oh, there is so much everyone is offering here! I was diagnosed with Sjogren's, Fibromyalgia and CMF a year ago. I am being followed by a rheumatologist, which I do think helps. He has me on Lyrica, which really takes away the joint pain, as well as a muscle relaxant and Cymbalta. Although these medications have helped enormously with the pain, I still get discuoraging "flares." As for exercise, I started walking 5 minutes a day and built up. It helps that I have a dog I have to walk. She and I are now up to 25 minutes a day. The trick, I think, is to start slowly.

I was an avid swimmer before my diagnosis and now I am too tired to swim. I hope this doesn't sound unsympathetic, but I try very hard not to grieve the swimming and my lack of energy. I agree that a positive attitude really does seem to help. If you can't exercise, try some YouTube stretches. If you happen to have a good day, try very hard to celebrate that. Also, I meditate every morning, which seems to help. If you are spiritual, add prayer to your day.

As for feeling isolated, I think that is one of the worst part of this illness. Most of my friends no longer email or want to get together. I am incredibly lonely and am too exhausted to join a support group. The loneliness kills me. I try to read books, put as much energy as I can into my family and try to believe that I am getting stronger everyday. Hope this helps!


DearKqiuixtar, from the number of replies it seems there are many of us that feel this way. I feel isolated too.

WE've moved 3 times in the last 7 years, and its lovely where our house is in Harpers Ferry WV, however, the area itself is isolated, I've been here 1 1/2 yrs and know no one, don't attend any functions or church, as you can understand it is too hard to do anything. I've has Sjogrens' for over 30 years, now according to my rheumy have some Lupus, some RA, sjogrens and connective tissue disorder. went to my grandson's Kindergarten graduation in the DC area about 5 days ago, have been really bad since. I can rarely drive, my husband does; but unlike someone's husband in this thread, he is not supportive; I think he cares, but doesn;'t know what to do with me, neither does my doctor. I have inflammatory erosive arthritis too, and need to take a Prolia shot 2 x a year. Had an appt, she didn't give me the shot; I tried to get an appt again, and basically her staff blew me off. Finally, I did get to speak to Dr., she insisted that I did have the shot, my sister from NC was with me. The Dr asked for her phone # to confirm the shot. I believe she thinks i'm senile. I said fine, then she finally read her own notes, and I have an appt tomorrow. I think I'm quite alone, started Plaquenil 2 months ago, no help so far, but I'll keep the faith. Now I need to thank you and all of you for helping me feel less lonely.

Oh, there is so much everyone is offering here! I was diagnosed with Sjogren's, Fibromyalgia and CMF a year ago. I am being followed by a rheumatologist, which I do think helps. He has me on Lyrica, which really takes away the joint pain, as well as a muscle relaxant and Cymbalta. Although these medications have helped enormously with the pain, I still get discuoraging "flares." As for exercise, I started walking 5 minutes a day and built up. It helps that I have a dog I have to walk. She and I are now up to 25 minutes a day. The trick, I think, is to start slowly.

I was an avid swimmer before my diagnosis and now I am too tired to swim. I hope this doesn't sound unsympathetic, but I try very hard not to grieve the swimming and my lack of energy. I agree that a positive attitude really does seem to help. If you can't exercise, try some YouTube stretches. If you happen to have a good day, try very hard to celebrate that. Also, I meditate every morning, which seems to help. If you are spiritual, add prayer to your day.

As for feeling isolated, I think that is one of the worst part of this illness. Most of my friends no longer email or want to get together. I am incredibly lonely and am too exhausted to join a support group. The loneliness kills me. I try to read books, put as much energy as I can into my family and try to believe that I am getting stronger everyday. Hope this helps!



Fern said:

Oh, there is so much everyone is offering here! I was diagnosed with Sjogren's, Fibromyalgia and CMF a year ago. I am being followed by a rheumatologist, which I do think helps. He has me on Lyrica, which really takes away the joint pain, as well as a muscle relaxant and Cymbalta. Although these medications have helped enormously with the pain, I still get discuoraging "flares." As for exercise, I started walking 5 minutes a day and built up. It helps that I have a dog I have to walk. She and I are now up to 25 minutes a day. The trick, I think, is to start slowly.

I was an avid swimmer before my diagnosis and now I am too tired to swim. I hope this doesn't sound unsympathetic, but I try very hard not to grieve the swimming and my lack of energy. I agree that a positive attitude really does seem to help. If you can't exercise, try some YouTube stretches. If you happen to have a good day, try very hard to celebrate that. Also, I meditate every morning, which seems to help. If you are spiritual, add prayer to your day.

As for feeling isolated, I think that is one of the worst part of this illness. Most of my friends no longer email or want to get together. I am incredibly lonely and am too exhausted to join a support group. The loneliness kills me. I try to read books, put as much energy as I can into my family and try to believe that I am getting stronger everyday. Hope this helps!

Thank so much everyone,you helped so much just being out there for me.
Today my husband took me to a movie to get me out of the house.
I am on an infusion every 4 weeks, Celebrex, lyric etc…I finally am seeing
a pain Doctor to manage my pain.
Yes the Clorine in the pool gave me a rash that lasted a year. Also I have
Had a broke. Metatarsal in my foot that has not healed due to steriods.
I have to stop now I’m tired
Thank you all for the support.

I use to do so much. I use to go dancing,home remodeling, gardening, car shows, etc. Now with Sjogrens and other autoimmune diseases and new diagnosis of Parkinson's I only get out to Dr's and Grocery store and I play cards with some other women every few weeks. I am 64 and they are in their 80's and they are doing better then I am. I have no family or help and my women friends are to old and have their own health problems to really help me. My visionseems to be getting worse all the time and trying to keep what teeth I have left. It is really hard to get yourself out when you have no energy to do anything. We have to at least try to do as much as we can.

Hello Kquixtar,

Your situation sounded similar to mine.You prompted me to sign up. I was just looking and most likely would have said what I usually do, I will join later. I was a work out fanatic but have had a hard time working and working out any. Now that I am off work for the summer I am doing yoga but spend most of this Yoga Over 50 DVD lying on the floor with the teacher thoroughly discussing what we plan to do versus doing any hard work or anything strenuous. At least it is a start. My fingers and toes hurt, but fortunately I still work as much as I can. Only dx with Sjogren's but it sounds so much like RA. Part of me feels protected staying home most of the time. On the other side I feel lonely and worry about trying to find new friends. New friends may not accept me and may require energy I just don't have. Not sure what to do. I can relate to your feelings of isolation. In addition to outings involving the doctor I have to count the grocery store as an outing as well. It is hard for me to recognize the low energy person I am now versus the go getter I once was. Not sure where best to find support, but am glad to be a new member of this group.

Yogatime,
So glad you joined. It helps to get out things that bother you that doctors or family don,t understand. Knowing we are all struggling with these problems somehow makes them easier to accept.

yogatime said:

Hello Kquixtar,

Your situation sounded similar to mine.You prompted me to sign up. I was just looking and most likely would have said what I usually do, I will join later. I was a work out fanatic but have had a hard time working and working out any. Now that I am off work for the summer I am doing yoga but spend most of this Yoga Over 50 DVD lying on the floor with the teacher thoroughly discussing what we plan to do versus doing any hard work or anything strenuous. At least it is a start. My fingers and toes hurt, but fortunately I still work as much as I can. Only dx with Sjogren’s but it sounds so much like RA. Part of me feels protected staying home most of the time. On the other side I feel lonely and worry about trying to find new friends. New friends may not accept me and may require energy I just don’t have. Not sure what to do. I can relate to your feelings of isolation. In addition to outings involving the doctor I have to count the grocery store as an outing as well. It is hard for me to recognize the low energy person I am now versus the go getter I once was. Not sure where best to find support, but am glad to be a new member of this group.

I too am isolated. I want to move back to MA.where I would at least have family but I can’t afford it. Every day I just want to cry but can’t even do that. I don’t want to complain, today seems like an exceptionally bad day.

Hi Kquixtar,

I feel your pain. I too have SS/Lupus and in retrospect I can see all of the signs/symptoms of these diseases for the better part of 50 years of my life. I was diagnosed in 2012 and received the standard scripts of plaquinil, blood pressure meds and various meds for pain/muscle spasm etc. Most of these various meds have been tried and discarded either due to causing to many undesirable side effects or simply not working. I have been on a gluten less diet for about two years and it seems to have helped with my skin problems to a certain degree. Not gluten free, but gluten less diet. My activities have become severely curtailed due to this disease compared to what I was accustomed to all of my life. In the last two years I have had three medical 'procedures' to try and heal a medical condition called Aortic Abdominal Aneurysm. The first two procedures failed thus requiring an 'open' AAA operation. Where they cut through your abdomen and remove the aneurysm. Replacing that part of your aorta with a man made tube. The aneurysm I had was 8.50 centimeters and probably should have burst before it had reached that size but God's grace spared me. It has seemed to me like it has to you that most of my going out was for doctor's visits or other medical issues. So, like most people on this site I/we are learning to deal with this disease and adjust our lives accordingly. But we all can and must adjust and learn to enjoy our lives accordingly even though there are many things we can no longer take for granted physically, mentally or emotionally or relational as well. I am learning as we all are and we can all still have a good life even with the changes brought on by Sjorgren's/Lupus/R.A. God's blessings upon all of you and be well.

That is so good that your AAA was taken care of. I have seen that surgery in the past but always under emergent conditions. That’s huge to have caught that. I feel the same about medications.
I was on several medications that made me cough all the time and got off them right away.m

Has anyone tried to sign up for disability and if so how hard is it yo get?

Hi - your comment really resounded with me today. I try to be positive as so many here have suggested. I also know that there are so many suffering more than I am. Having said that I broke down today while trying to plan my 25th anniversary trip with my husband. Traveling is so exhausting and flying really seems to aggravate all my symptoms. It makes me so sad that my health impacts those around me. It is so easy to feel isolated because every day is a potential mine field of symptoms. I have recently moved and not made any friends because it is just so hard to explain all of this to new acquaintances without sounding like a crazy hypochondriac :). As I have moved I am also starting over with new docs - that has actually been positive. I empathize so much with the isolation and I wish you the best.