Hi, it seems every year my symptoms have been worse but sometimes it isn’t worse but mew symptoms. I have had 6 months of fatigue and weakness. I enjoy and when I am feeling a bit better, still enjoy being active. I like taking martial arts and running but not these past 6-8 months. It’s been rough!
It is becoming depressing for me because I am so tired and weak all the time.
I am used to getting up and going for a short run/ walk. Years before it was a run/walk, it was a full on non stop run. Now, I am happy if I walk down the block and back.
My rheumy says no coffee/tea due to the dehydration (and dry mouth) I have had.
I feel like Sjogren’s is taking away the things I enjoy most and find stress relieving. Does anyone have any prescriptions or helpful tips to eliminate the exhaustion and weakness?
I’m sorry about this. The fatigue can be truly overwhelming and life changing. There are a number of people who use Plaquenil and find that it can make a really big difference in the fatigue. For me, it didn’t make it go away completely, but it did lessen the fatigue. This is still something that I struggle with.
I would definitely encourage you to keep moving. This can make a really big difference in how you feel, and your energy levels. It may not be what it used to be, but getting outside and moving a bit can be helpful. Remind me if you’re taking any meds.
I am currently on Plaquinel and last year I took it for about 9 months and had to stop because my rheumatologist retired and I moved/changed jobs and insurance. It’s been difficult. It didn’t seem to work then but I told my new rheumatologist that I would give it another chance. It’s been a month and it may or may not be the Plaquinel but I have been having some symptoms that my rheumatologist thinks may be adverse. That said, I am sure there are other ideas that my rheumatologist has for me.
I agree that it seems Plaquinel can be very helpful with fatigue. I think it is definitely one of the benefits of taking it. This year has been especially rough but I am looking into what options are out there for me. Joining this support group being one of them. There also seems to be meetings that Sjogren’s foundation gives in different towns and I plan to attend the one coming up near me. I hope that I can help others in my situation.
That’s a bit surprising, that a change of insurance forced you to drop plaquenil. That seems to be one of the less expensive meds. I remember when I first started taking plaquenil, looking at all of the patient reports of adverse reactions. The only warning that all patients should know is that they get their eyes checked for toxicity to the eyes. I wound up having some problems with my eyes about 5 years into using plaquenil. Regular visual field tests showed a deficit, but it wasn’t clear that it was caused by the medication. Not shockingly, it wound up being due to inflammation.
Sorry, I think there is some confusion in my last post.
Chicago and Insurance: Insurance didn’t make me drop plaquinel, not having insurance during job/move transition did. (Takes 6 mon. for insurance to kick in with new job). When my rheumatologist retired and I left my job to move (all within same time frame), my rheumy tried leaving me with prescription to last me a few months until new job had insurance kick in. Without insurance, my rheumy told me to order from Canada because instead of trying to come up with $600 out of pocket, which is not afforadable for 2 months supply (which still wouldn’t have covered me til insurance at new job kicked in…) I could pay something a lot less… this is just an example.
On my very first post to Sjogren’s group as a newbie:
As a single person, living on my own it has been difficult. Chicago has been low on employment and working a dead end job isn’t easy. I can take Plaquinel and maybe even get it prescribed by my GP if necessary but it’s my financial/living situation. I am currently housesitting which helps with stability right now. It’s a luxury to afford to take care of oneself these days. Even getting on medicaid prior to job insurance, I was put on a 6-8 month waiting list to see a rheumatologist because there weren’t any rheumatologists outside a couple that worked through a hospital in Chicago that would take medicaid. When that is your only option outside of first diagnosis from your general doctor, that’s what you work with.
Sorry about your eyes. I am aware about the eye inflammation and problems due to Plaquinel. My ophthamologist (whom I just found is not in network with insurance… i am paying terribly for this) told me all about the problems that can develop but that it rarely happens anymore. There are some other adverse effects my rheumatologist told me about but it’s not as common. That said, we are waiting it out to see if it is Plaquinel or just Sjogren’s. I am not convinced it is the Plaquinel because I didn’t have these problems before when taking it. I concern in the past when taking it was that I wasn’t sure it was working at all. Anyway, we shall see.
Thanks for the explanation.
I hope that everything I said didn’t come acrossed as being a jerk. I have just been frustrated with the health care system. Things are starting to smooth out for me in terms of the job transition and what not. Everyone deserves the right to care for their basic needs and those dealing with chronic illness need to be able to do that. I have found that I haven’t been alone in trying to get healthcare. So, it’s great to find folks that will share their stories and listen. Peace and love. <3
I’ve never heard of a six month wait for insurance. That alone would make me extremely frustrated.
Retail sucks! Some places it’s 6 months before benefits kick in, some 3 months. It depends on the company. I have been applying everywhere and there is one place I am looking to start a new career with and they have amazing benefits that kick in right away. Plus, it would be doing something I love! So, i am hoping on that coming through.
I have found grant money for medical bills, for Lupus patients, through a local charity.When I find stuff like that I try to spread the word. I haven’t yet found something like that for Sjogren’s patients. I continue my search and if I find anything I will keep everyone posted. crosses fingers
Hey mochacat…I struggle with fatigue myself. It comes & goes. Sometimes it’s so severe that I have to take 2 naps BEFORE noon. I hate when I do that but it is what it is. Other days, I can manage to push myself. I don’t like to do that but it seems that lately I am exhausted ALL THE TIME!!!
BUT…my new rheumy figured out that my stored iron (ferritin) & my hematocrit levels are both low!! Hence why I may be FREEZING all the time & so exhausted!! I started on ferrous gluconate 324 mgs daily this past Friday. But sadly, like plaquenil it can take several months to build up in my system and my blood work to show that it is helping. But it’s a start!!! This NEVER would have been found if I would have stayed with my old rheumy!
Wishing you all the best…
Lisa
Thanks! Limarie 
I am glad you got away from your old rheumy and you are healing/caring for things that weren’t noticed.Yes,I think the Plaquinel will help. I am only on the second month with it. I too take an iron supplement but my vitamin levels are normal. So, I am hoping the Plaquinel does its job. Also, I need more sunny days. No more grey winter skies! I want some sunshine.
I totally understand the insurance battle. I hope that you are feeling better and that you have solved the insurance woes. I know it can be so difficult to deal with all of this.
K
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Yes, I did get it figured out finally. However, the healthcare system in the US doesn’t make life easier. My neice has Polymiositis and Derma. and she is only turning 19 this month. If it wasn’t for her father’s insurance she would be in serious trouble. I try not to think about how many people out there need health insurance and can’t receive it cause it only makes me physically hurt more!
I want to post this, I decided on July 1 of this year, to go vegan. Six and one half weeks later, I noticed my fatigue was gone. I had suffered with fatigue for maybe over 2 years. It just became a way of life for me, everything I did was planned around my fatigue. 6 1/2 weeks of no meat, dairy or eggs I was laying in bed and I couldn’t fall asleep. I said to myself, “I’m not even tired, why can’t I fall asleep?” Then I heard myself, “I’m not tired!” It was an epiphany! I don’t know if the diet had anything to do with it but I had NEVER had a break from the fatigue once it set in. It didn’t come and go. Once it set in, it never left. My stock answer to everyone who would say to me, “How are you?” was always, “tired”! I feel great still. The symptoms of SS are very annoying, dry eye, dry mouth, and all that goes with it. To lose the fatigue is wonderful!! I wasn’t expecting this, I didn’t go vegan because of SS. The two, I didn’t think had anything to do with each other. I am keeping track and so far I haven’t had a day of fatigue since it left me! Don’t get me wrong, I get tired. But tired isn’t anything like the fatigue of SS, agreed? I can’t wait to tell my Dr!
Congrats on going vegan!
It is a wonderful transformation for your body. That said, I have been vegan for 10 years and i started because I didn’t have health insurance and I couldn’t see a doctor.
Veganism is probably one of the first steps towards an anti inflammatory diet. I never have inflammation but I do still get extremely fatigued, aches/pains & other symptoms. I can’t imagine not being vegan. It’s a good first step to anti inflammatory diet & a lot of cooking for the autoimmune system books will have you eating your veggies.
Also, remember your B-12 supplement. I take both b-12 and iron regularly. Iron you can get from a lot of greens but there are some greens I can’t have, sadly kale is one of these. I am actually allergic 