how do u all manage to cope with chronic fatique that last for days
5-027.JPG (2.99 MB)
I looked back through the old discussions, and there's some useful tips on this discussion back in April 2014:
Fatigue
http://forum.sjogrenssyndromesupport.org/forum/topics/fatigue
Hope it helps!
Hi Maggie May,
It's very coincidental to see your post today. I woke up with incredible fatigue today!! How long have you had Sjogren's? I was diagnosed several years ago but this massive fatigue is quite new and very unwelcome!! I'm going to read all these tips and I'm sure find something that helps. Good luck to you!
Take care,
Bels
Maggie…my chronic fatigue is life changing…i do what I can and organize what needs priority…many days I don’t leave the house…if I do anything social…i usually only last 2 hours and then head back home…anyone who knows mr just knows this is how I live
1 Like
I stick to a very strict diet which helps with the fatigue clueton free diet,,, and lots of fresh vegetables,, and fruit,,, and a little bit of meat,,, nuts and seeds , When I was first told I had SS my fatigue, I was really bad I spend the first literally 2 years in bed with my daughter sitting on my bed she was just 3 months old when I first diagnoised with it,,, it has been 21 years on and diet to me is more important than ever it has helped with the fatigue,,,, rest and listen to your body,, and there is no miracle cure but I do take braggs apple cider vinegar 3x per day one tablespoon mixed with a little bit of water,,,, funny enough if I am on holiday or I forget to take ACV my symptoms get worse,,, so I know this helps for me,, I do not take any medication except one sleeping pill to help me sleep,,, I think a lot of medication that people take makes their symptoms worse,,,
1 Like
Bels said:
Hi Maggie May,
It's very coincidental to see your post today. I woke up with incredible fatigue today!! How long have you had Sjogren's? I was diagnosed several years ago but this massive fatigue is quite new and very unwelcome!! I'm going to read all these tips and I'm sure find something that helps. Good luck to you!
Take care,
Bels
hi bels iv had sjogrens about seven year also have fybromialgia raaynards syndrome thyroid prob liymadema in legs sytemic dry eyes aand throat i can cope with aall that but chronic fatigue puts me down feels like an alien has took over lol
The fatigue is just so debilitating. I have suffered from it for so many years, but was diagnosed last year with SS. At least I have a legitimate reason for it now. Used to think I was just lazy, or perhaps there was something I could do to increase my energy level. Now I no longer fight it. When I'm depleted, that's it. I do go to work everyday, but sit in my car at lunch and close my eyes for an hr. I don't push myself, and I no longer care what people think. My friends and family know, when I've had enough I take a nap.
Of course on those days when I have energy, wow! It's such a great feeling. My primary did recommend vitamin B-12. I take 3000units per day (slow dissolve) type. It does help me a bit.
Sending you good thoughts.......................
Connie said:
The fatigue is just so debilitating. I have suffered from it for so many years, but was diagnosed last year with SS. At least I have a legitimate reason for it now. Used to think I was just lazy, or perhaps there was something I could do to increase my energy level. Now I no longer fight it. When I'm depleted, that's it. I do go to work everyday, but sit in my car at lunch and close my eyes for an hr. I don't push myself, and I no longer care what people think. My friends and family know, when I've had enough I take a nap.
Of course on those days when I have energy, wow! It's such a great feeling. My primary did recommend vitamin B-12. I take 3000units per day (slow dissolve) type. It does help me a bit.
Sending you good thoughts.......................
Wow, thank you all so much for your great advice. My SS is primary but I also have RA, fibromyalgia, and worse of all, Trigeminal Neuralgia.
So not taking medications is not an option. I have been weaning off several of them though. Sometimes, the side effects are worse than the disease! I have tried the GF diet and it did seem to help. Right now my face hurts so much that I eat whatever is soft. I haven't tried B-12 but my Vitamin D was very low so now I take 4000 units per day. Also my sodium levels were very low so now I drink Gatorade light and add salt to everything I eat. That has made a huge difference in my energy levels.
Thanks again to all of you and hope some of the things I do can help someone too. Take care!!
Bels
I have energy in the morning and spent a couple of hours doing what needs to be done and then rest. I need a nap in the afternoon and then can do some things, but really tired the rest of the day. I do have sleep apnea and my cpac has the oxygen that I need and also more water into my body.
hi aunt j pleased to meet u sorry to hear u have sleep apnea. i also have bronchiectasis which keeps me awake coughing up mucus most nights think thats where the fatigue comes in i learned there is a lot of nice friends on this group always there to help im 65 yrs of age but find it easy to talk freely hope you feel better soon
I am a fan of trying the natural first but I have to say that the fatigue didn't get into a manageable realm until I started on Plaquenil. It made such a major difference from me. I've been on it for a year and a half and its been a life saver. I used to scare my son.... I would crawl in from work and make it to the couch where I would literally pass out cold for a couple hours.I was coming in to work late on top of it. Now, the diet changes, etc have a chance to have an effect. (I've been on it since about May 2014. At the doctors recommendations, I take flaxseed oil, B12, D3, and Biotin. I also avoid the Big 3 of inflammation which is sugar, dairy and wheat (think heavily processed foods and it makes it easy). They help overall too. Good luck and please keep us posted.
I was diagnosed with SS in February although in hindsight I have had symptoms to various degrees for years. The “flare” in January nearly did me in. It was near this time that I discovered the Better Body System. It has changed my life and kicked Sjogren right in the teeth. After 1 week my health so dramatically improved that I became a business member. The energy drink has been a life saver and I now have energy to spare! Except for the restasis for dry eyes I take no meds and I have virtually no symptoms (and they were extensive)! I would be happy to explain this program to anyone that wants more info or feel free to Google it…it has changed my life.
I also second everything Enjoy life stated above. Diet is everything. …we are literally killing ourselves with forks in this country.
Thanks for all the good advice - I just had lip biopsy and I have Sjogren’s - I’m going to specialist next week - my primary doctor referred me - I take b12 - my biggest problem is constant sores in my mouth and end of my tongue - dry mouth is awful - and dry eyes - sandy feeling most of time - hope he has some answers - I’ve been reading everything I can thanks all
i know how u feel wiith dry eyes i use visco tears octummune eye cream and clindas drops and now on prednisolone dops my eyes have now gon systemic not sure what he means so i can under stand how u feel its not much fun sending u best wishes hope you feel better soon
sojo2014 said:
I was diagnosed with SS in February although in hindsight I have had symptoms to various degrees for years. The "flare" in January nearly did me in. It was near this time that I discovered the Better Body System. It has changed my life and kicked Sjogren right in the teeth. After 1 week my health so dramatically improved that I became a business member. The energy drink has been a life saver and I now have energy to spare! Except for the restasis for dry eyes I take no meds and I have virtually no symptoms (and they were extensive)! I would be happy to explain this program to anyone that wants more info or feel free to Google it......it has changed my life.
I had the absolute worst fatigue ever sleep b12 2 coffees a day and lattes didn’t help. However, I started taking these hair vitamins 3 weeks ago that help with energy and now I don’t know what to with myself Its called manetabolism and like I said there actually hair vitamins but Since I’ve been taking them I haven’t had to take a nap in weeks I’m shocked still pinching myself to see if I’m still awake. I think I’ll stick with these vitamins just for energy purpose even if my hair never grows lol.
The bottle says its infuse with antioxidants to strengthen immune system and boost energy in a healthy way … Sheesh they have been working beyond awesome! of course always talk to your doctor but I would recommend to anyone suffering from fatigue