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Autoimmune Diseases and Fatigue
Fatigue is probably intertwined with the definition of "illness", almost any illness, but with some conditions fatigue becomes ingrained into the afflicted person's being and is a feature of their daily life. Such is the case with the highest profile disorders, cancer and cardiovascular disease, but it is just as true with at least some autoimmune diseases. I have a long history of dealing with autoimmunity and the complaint that kept bringing me back to doctors persisting in finding out what was going on was the dogged lack of energy, vitality. I got guess after guess after guess and when I got the "answer" it was basically that fatigue was part of the deal with the autoimmune disease that I have, Sjogren's, as well as I'm sure many others. So what I'm asking here is if you experience it, fatigue, how has it impacted your life and how do you deal with it? Have you found anything that you are sure mitigates it?
In my case its exercise, rest, and a fairly regulary low dose, around 50 mgs (usual recommended dose 200 mg) of modafinil, which I don't take for Sjogren's but rather for "Excessive Daytime Sleepiness" linked to Obstructive Sleep Apnea. I accidentally found out that it mitigated my general weariness. I've read some solid studies that found that American Ginseng can help cancer-related fatigue but apparently it doesn't work for Sjogren's, for me at least. Since fatigue impacts a person's total life experience in all domains, any information that might lead to dampening or controlling it would be very helpful to a lot of folks I'm sure.
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I Too have been recently diagnosed with mesenteric panniculitis and have gained weight. It is really strange to me because I actually eat less now than I ever have. I noticed the bloating around my abdomen and the pain I have comes from my flank (lower right back around to my right groin area). The fatigue is really unbearable. I haven't been able to find anything that helps. I was recommended to this site by one of my contacts on the mesenteric panniculitis so I was hoping for some insight. I have an appt with my GI this upcoming week. If I come back with any information about the weight gain or the fatigue I will certainly pass them along.
I hear you on the weight gain. I know I used to eat tons but since being diagnosed with MP i have not been but the weight keeps coming. This I think worries me the most.
Adele
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1 ReactionI know right!
I thought that I was alone in dealing with the weight gain with the MP but apparently not.
This worries me too! You're not alone in this Adele.
I do get fatigued with Sjogrens. Sometimes I just have to go to bed. But I am trying to be active, doing water aerobics twice a week and trying to please my Fitbit in between!
I have sleep apnea too. Waiting for the machine to be delivered with O2 supplement. We live at above 6,000 ft and have very little humidity. We have a humidifier in the bedroom. Have had a mouth device for a couple of years.
Hello, @dennisl27, @adelecj57, and @marylou705,
Do take a look at this recent story published on Sharing Mayo Clinic, titled "Research forges path to effective treatment for sclerosing mesenteries"
http://mayocl.in/2i5EIlB
I hope you will find it encouraging.
I am so thankful for you and all of you who share your journey. I have felt so alone, judged by so many, and lost so much of my life due to numerous active EBV diagnosis, complications from my gastric bypass since 2002, more doctors than I ever want to see again, and twice truly wanting to no longer live.
This group is amazing. I can't say enough how thankful I am.
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5 ReactionsDo you take a magnesium supplement? If so, of you don't mind sharing, what is it? Has it helped you?
I think the obvious underlying cause of fatigue is non-restful sleep. I've tried just about everything (magnesium, melatonin, various amino-acids, warm milk-which works surprisingly well sometimes) but I resorted to sleep meds. Now I have trouble getting up, but when I do get up, I'm pretty functional. Sometimes just talking myself through fatigue helps. I have a list, and I have to do the list. But when fatigue wants to win, it does. Magnesium is helpful, but it is easy to get too much and then the tummy trouble start again.
Try everything that cannot hurt you. Examine your sleep. Apnea plays a huge role from what I understand. Any drugs you take for a condition will impact your sleep. Make good sleep a priority. Allow yourself to rest, and sometimes the body responses positively.
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4 ReactionsI have tried Magnesium in a number of forms. I have a Magnesium oil that can be mixed with massage oil and rubbed into sore places. I find if I use the straight oil it makes me itch. There is a powdered supplement with Magnesium which is fun because when you put it in warm water it bubbles like a witches brew. Magnesium needs to be taken with Calcium and Potassium because they are all work together. You know when you are full up on Magnesium when your bowels go loose...D-Ribose is helpful also!