Please talk to you doctor about taking anything that strengthens the immune system. We have systems that are already overactive. What is good for the average population can be very bad for us in the long term.
Gena and Katrice....the hair vitamins tend to be Biotin, B complex type things. They have been great for me too. My hair and nails used to be so brittle it was very hard to deal with. I used to get sores on the edges of my mouth or inside the lip too. The doc said that it can happen when the B vitamins are low. Since I started on Biotin and B12 I haven't had any issue with it, thankfully. I have neuropathy so those and the D3 are checked often. Woohoo.
I am enjoying a flare right now. I've had a stroke and am slowly recovering from a broken hip add that to the fact that I will be 79 in a couple of weeks its been difficult to figure what is causing what. But the SS fatigue when it hits is like nothing else. Thanks everyone for the advice Am increasing my Vitamin D3 and will search online for Bioten and a liquid B12.First I'll start with apple cider vinegar. Thank you all.
I am enjoying a flare right now. I've had a stroke and am slowly recovering from a broken hip add that to the fact that I will be 79 in a couple of weeks its been difficult to figure what is causing what. But the SS fatigue when it hits is like nothing else. Thanks everyone for the advice Am increasing my Vitamin D3 and will search online for Bioten and a liquid B12.First I'll start with apple cider vinegar. Thank you all.
Just be aware that D3 can build up in the system and it is possible to overdose. Adjust your intake according to your blood work. :)
I am sorry to hear that you are flared up right now. I really hate when it happens. Its different now, being on Plaquenil for so long. (I mean that in a good way.) I still get flared but its more manageable these days. You are one tough cookie to be dealing with everything at once!
Thank you for raising this issue of fatigue, you've started a really good discussion! I struggle with fatigue too. Yesterday my rheumatologist said I have Sjogren's AND Fibromyalgia. I was taking 300 mg. of Pacquenil for about three months with no improvement, so he switched me to the Fibromyalgia medication, Lyrica. I have no idea how doctors treat those of us with more than one disease, but the Lyrica has helped my fatigue enormously! I take 50 mg. of Lyrica in the morning and 100 mg. at night. The extra 50 mg. helps me sleep, as I suffer from insomnia and also take 50 mg. of Trazadone a night. So I think am being treated more for my Fibromyalgia than my Sjogren's, but for me, these medications are really helping to reduce the fatigue as well as the excruciating pain that came along with the fatigue. Hope this helps!
Hi Fern.......I also have Sjogrens and fibro....I have severe chronic fatigue too...and chronic migraines...5 - 11 per month...when I have a flare it usually lasts several days with severe migraine, all over body aches....then I will have a few good days.......Placquenil also did nothing for me.....I'm on different meds to help with migraines and body aches...the dr just put me on Zoloft....it seems to be helping, but time will tell.........I also need med to sleep or I would never be able to sleep........but I nap every day cause of the severe fatigue......isn't that something we are so tired but have sleeping disorder!!!!!! I'll send you a friend request..........
Thank you for raising this issue of fatigue, you've started a really good discussion! I struggle with fatigue too. Yesterday my rheumatologist said I have Sjogren's AND Fibromyalgia. I was taking 300 mg. of Pacquenil for about three months with no improvement, so he switched me to the Fibromyalgia medication, Lyrica. I have no idea how doctors treat those of us with more than one disease, but the Lyrica has helped my fatigue enormously! I take 50 mg. of Lyrica in the morning and 100 mg. at night. The extra 50 mg. helps me sleep, as I suffer from insomnia and also take 50 mg. of Trazadone a night. So I think am being treated more for my Fibromyalgia than my Sjogren's, but for me, these medications are really helping to reduce the fatigue as well as the excruciating pain that came along with the fatigue. Hope this helps!
hi thanks for your reply iv not even heard of lyrica does it come under another name i also fibromyalia very painful at times and insomnia my my rheumatoligist has not offered me anything apart from pacquenil. but i will ask about it thank for the imfo sending u best wishes maggie may
Are you completely satisfied with your rheumatologist? My first rheumatologist just told me I had Sjogren's, gave me a prescription for pacquenil, (nothing for dry mouth, even though I had complained of dry mouth and dry mouth is certainly a symptom of Sjogren's), and told me she would see me in six weeks. If you're completely happy with your rheumatologist, I certainly don't want to rock the boat, but I am surprised that he/she wouldn't consider the fibro medication, since these diagnoses seem to be so intertwined. I have learned through hard experience that some rheumatologists are researchers and actually don't know much about the nuts and bolts of our disease(s). I now have a doc who focuses on actual treatment and he listens to my description of my symptoms and seems to have a "toolbox" of various approaches and strategies. I'm just a little worried that your doc has only offered you pacquenil, when in fact, there are a range of other medications that might help more. Just my two cents and I wish you the best with this terrible fatigue problem,
you sound like a very nice personhi fern well I thought I was happy until I read every ones replys I only take pacquenil also called quinoric and salagen also called pilocarpine for dry mouth thank you the update I wiil be looking into that imfo as u say you take what they are saying not thinking there could be more. I have not had the chronic fatigue since my GP found my kidney count was very low had gone below 40 I felt very ill and I just put it down to fatigue at its worst. now I have 4 brill days and counting thank for getting back to me fern it means a lot you have been very helpful hope you are having a good day I will take on board all you have said you sound like a very nice person sending you happy thoughts maggi may
Thanks for writing. You sound like a very nice person too! If youâre happy with the pacquelnil and salagen, thatâs great. You could also stay on these medications but get a second opinion from another rheumatologist. If youâre getting the medication from your primary care doctor, then it might make sense to see a rheumatologist who practices and sees a lot of patients with our condition. See what you think.
Have a nice day,
Carol
maggie may said:
you sound like a very nice personhi fern well I thought I was happy until I read every ones replys I only take pacquenil also called quinoric and salagen also called pilocarpine for dry mouth thank you the update I wiil be looking into that imfo as u say you take what they are saying not thinking there could be more. I have not had the chronic fatigue since my GP found my kidney count was very low had gone below 40 I felt very ill and I just put it down to fatigue at its worst. now I have 4 brill days and counting thank for getting back to me fern it means a lot you have been very helpful hope you are having a good day I will take on board all you have said you sound like a very nice person sending you happy thoughts maggi may
Thank you for raising this issue of fatigue, you've started a really good discussion! I struggle with fatigue too. Yesterday my rheumatologist said I have Sjogren's AND Fibromyalgia. I was taking 300 mg. of Pacquenil for about three months with no improvement, so he switched me to the Fibromyalgia medication, Lyrica. I have no idea how doctors treat those of us with more than one disease, but the Lyrica has helped my fatigue enormously! I take 50 mg. of Lyrica in the morning and 100 mg. at night. The extra 50 mg. helps me sleep, as I suffer from insomnia and also take 50 mg. of Trazadone a night. So I think am being treated more for my Fibromyalgia than my Sjogren's, but for me, these medications are really helping to reduce the fatigue as well as the excruciating pain that came along with the fatigue. Hope this helps!
Hi i have had SS for 22 years and have been diagnoised with Fibromyalgia as well, I do not work, so i will just go to bed with bad bouts of fatigue, I also still have migranes i hate them, but stick to a very good diet of no sugar no gluten, and have found that helps with my fatigue, I do take a sleeping pill at night as i have really bad anxiety, but do not take any other medication, i need to sleep and that i think helps me cope with the day, and the other issues that come up, with my illness, my fatigue will come and go,
Yes, fatigue is really a killer. Hard to explain to people who don't experience it. I work everyday and some days I just "hit a wall". Can't go on........sleep in my car during lunch.