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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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@oregongirl When you have problem in the ER or with an ER doc or nurse, Immediately tell a friend or spouse . write it down a soon as possible in detail using names, the date and time, everything. Do it calmly and carefully.. If you are admitted, tell the admitting doctor and nurse. Tell everyone you come in contact with what happened. Documenting is very important. Write a business style letter to the head of the hospital and all of the commissioners.Send aa copiy to the personnel department also and the head of the emergency department.Be sure that the letter shows that you cc’d it to the others. Remember: Note exactly who did what, don't blame anyone else.If someone elsewasnice to you and helpfulnote that ss well, such as lab tech, etc. Be calm, be honest, and ask them what they plan to do about the way you were treated. This way, you should hear from them.As soon as you see your regular doc tell him/her.what happened and how you handled it. Expect some of these people to cover for each other, but most are truly honest. Stand your ground with the exact truth.
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3 Reactions@ I must take magnesium to stop the very, very painful cramps especially in the legs. When I get up out of the bed it takes much muscle power to get to the kitchen, feed the dogs and the cats. Then take my meds. I hold on waiting for the day that some energy comes back and I can take care of what needs to be done just living. Eventually it does come back and I enjoy until it comes back. Just enjoying life. Keep holding on and be strong again. Tomorrow I will go to church. peach4141444
@ just wait. At 80 I have no teeth left. Dentures keep my smile intact. So what. I have a new boyfriend. and we truly care for each other. He is 85 and still going strong. We are enjoying the rest of what will be. So..... whatever will be with all the fatigue, please hold on and wait for the energy to come back. Depression brings the worst feelings so fight it. Kick it out, I know it hurts but some how continue to live, live live. Peach
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3 Reactions@ dear gemmax I also have sjogrens, RA and psoriatic arthritis so I do share your pain. I have other medical problems. It is hard for you. Yes, there are people like me and others who do understand how hard it is to continue without suffering. But like I told my son who was born with a double cleft lip and palate: look at the people who have no legs, who are slowly dying of cancer and all of the others. Help yourself and help the others. He is doing well after 19 operations and as you know i suffered with him. Through all the fatigue we must help ourselves and others. Love to everyine Peach414144
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3 Reactions@ Dear sweet oregonlady. I have experienced the same treatment at the er. I am 80 and have no teeth (they are dentures). There are others who have been mistreated as you have been. We understand and care for you. Some people should not be working in the health field. You are strong and that is good. Keep on being strong we are with you. Peach414144
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3 ReactionsGod bless you Peach you are a very strong,positive women if we could all look at others who have it worse of then me/us You are not bedridden ,you keep going for you and your son.
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2 ReactionsYes Peach we women need more magnesium who have fibro in particular There are many different ones out there for me Malete helps but if that doesn't help try another that's what I did till I found one that helped There is an old remedy for leg cramps ,pickle juice, sound crazy but it works I keep a jar of pickles in refreg .all the time I'm 75
Thank you ,as, s retired nurse I've seen so many people who couldn't get out of bed ,so sick ,there is lot of suffering in the world ,we really don't know how fortunately we are
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4 Reactions@oregongirl Wow, your hospital experience sounds aweful! I am sorry you had to go through that.
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2 ReactionsOregongirl my back pain is still there after 1week I'll give it till Thursday if not better calling Dr.Since he gave me shots I,he been exhausted slept most of yesterday and all night Don't know if it's the Cortisone he gave me or something else
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