Utterly Exhausted - Need Help

[finallyadx]

I think I had said previously - have your blood drawn to check for anemia (if you have not had that done)...this can make a HUGE difference with fatigue and can be an easy fix in the sense that you take iron supplements.  But DO NOT take iron supplements if you are not low in iron  -  too much iron is NOT a good thing either.

Hoping you can find some relief~!

[A66eyroad]

I hope my story will help you, or at least give you some hope. Because four years ago I was in the exact same place you are.

I am a person who has always been very active. My husband's nickname for me was Summit Woman because I loved hiking and fishing and running. I was never still, had an immaculately clean house, cooked huge dinners every night.

I started feeling like I couldn't do as much, I couldn't describe it except to say that my legs were like lead and I had a headache more often than not. I went to my doctor who told me to join the YMCA and take some exercise classes. He thought I was just out of shape. But I knew it was something more.

Then, slowly, I got worse and worse until I had zero energy and an almost constant headache.

Fast forward several years and lots more symptoms -- sores inside my mouth and nose, burning eyes, nausea that wouldn't go away, dizziness, earaches, toothaches where there was no tooth decay, and just plain feeling crummy. I saw three general doctors, two ear specialists, a head and neck guy, a gastrologist, an ophthmalogist. I had head scans and hearing tests and blood work and X-rays. Nobody had a clue. I overheard one of the doctors tell his nurse that he wanted to do a "serum porcelain level" on me because he thought I was "a crock." This was a very bad time for me.

One Friday after work I took three of the teenaged granddaughters to the mall about an hour away to shop for stuff for a baby shower we were throwing the next day. I was feeling really sick, but I stuck with it until we were finished. That night, they stayed over my house and we decorated and cooked and stayed up too late. All the while I was sick as a dog, but I kept pushing myself. I knew I was doing too much and that I would pay, but I wanted them to have a good memory of fun with Mimi!

The next day, the shower was a huge success! We did a great job, if I do say so myself!  I was so very sick, my feet were lead and my head was pounding and about to burst, but I put on my happy face. When the shower was over, the girls said they would stay to help me clean up, but all I could think of was GET OUT OF MY HOUSE GET OUT OF MY HOUSE GET OUT OF MY HOUSE!

And my husband was out of town that week. When he finally came home on Tuesday he couldn't believe that I was still lying on the couch with sticky punch cups and paper plates with bits of food still on them all around me. There were pots and pans still in the sink, dead balloons hanging from the light fixture and wrapping paper all around. I had tried to clean up, but just couldn't. Four days had gone by.

I made myself an appointment with a rheumatologist for the following Tuesday. I didn't tell my husband or anyone that I was going. I told myself that this was the last doctor I would go to, that I just couldn't live like this anymore. I made a plan to end it.

That rheumatologist saved my life! He told me I had Sjogren's and gave me hope that there would be better days.

He gave me a medicine called Plaquenil (I take the generic form of it, hydroxychloroquine) which I've been on ever since. I take two 200 mg. pills at night with my dinner.

And it took three months for me to feel a difference, six months for my husband to also notice a difference. After a year I was doing great! And by great I mean only two or three bad days per month.

So I want to ask you, poor dear Trooper --- have you seen a rheumatologist? Are you taking any medicines?

[rose]

My name is rose I also am not a doctor. I was diagnosed with ST 2 yrs ago. Several tests to rule out cfs....etc. I too had severe fatigue. ...Doctor put me on feldene.....it is amazing. I am getting some of my energy back. I too lack vitamin D.....going outside more.Water exercise. Please hang in there I too felt alone. Some people can't understand. So I refer them to this Web site to educate them and possibly understand what we are going through. Please don't hesitate to write me.

[Trooper]

I hope my story will help you, or at least give you some hope. Because four years ago I was in the exact same place you are.

I am a person who has always been very active. My husband's nickname for me was Summit Woman because I loved hiking and fishing and running. I was never still, had an immaculately clean house, cooked huge dinners every night.

I started feeling like I couldn't do as much, I couldn't describe it except to say that my legs were like lead and I had a headache more often than not. I went to my doctor who told me to join the YMCA and take some exercise classes. He thought I was just out of shape. But I knew it was something more.

Then, slowly, I got worse and worse until I had zero energy and an almost constant headache.

Fast forward several years and lots more symptoms -- sores inside my mouth and nose, burning eyes, nausea that wouldn't go away, dizziness, earaches, toothaches where there was no tooth decay, and just plain feeling crummy. I saw three general doctors, two ear specialists, a head and neck guy, a gastrologist, an ophthmalogist. I had head scans and hearing tests and blood work and X-rays. Nobody had a clue. I overheard one of the doctors tell his nurse that he wanted to do a "serum porcelain level" on me because he thought I was "a crock." This was a very bad time for me.

One Friday after work I took three of the teenaged granddaughters to the mall about an hour away to shop for stuff for a baby shower we were throwing the next day. I was feeling really sick, but I stuck with it until we were finished. That night, they stayed over my house and we decorated and cooked and stayed up too late. All the while I was sick as a dog, but I kept pushing myself. I knew I was doing too much and that I would pay, but I wanted them to have a good memory of fun with Mimi!

The next day, the shower was a huge success! We did a great job, if I do say so myself!  I was so very sick, my feet were lead and my head was pounding and about to burst, but I put on my happy face. When the shower was over, the girls said they would stay to help me clean up, but all I could think of was GET OUT OF MY HOUSE GET OUT OF MY HOUSE GET OUT OF MY HOUSE!

And my husband was out of town that week. When he finally came home on Tuesday he couldn't believe that I was still lying on the couch with sticky punch cups and paper plates with bits of food still on them all around me. There were pots and pans still in the sink, dead balloons hanging from the light fixture and wrapping paper all around. I had tried to clean up, but just couldn't. Four days had gone by.

I made myself an appointment with a rheumatologist for the following Tuesday. I didn't tell my husband or anyone that I was going. I told myself that this was the last doctor I would go to, that I just couldn't live like this anymore. I made a plan to end it.

That rheumatologist saved my life! He told me I had Sjogren's and gave me hope that there would be better days.

He gave me a medicine called Plaquenil (I take the generic form of it, hydroxychloroquine) which I've been on ever since. I take two 200 mg. pills at night with my dinner.

And it took three months for me to feel a difference, six months for my husband to also notice a difference. After a year I was doing great! And by great I mean only two or three bad days per month.

So I want to ask you, poor dear Trooper --- have you seen a rheumatologist? Are you taking any medicines?

Thank you for your response.  It does give me hope.  I do have a rheumatologist.  I tried Plaquenil a year ago but had to stop it after about 3 months because of stomach problems.  It killed my stomach.  I tried it with food, without food, split dose and with Prevacid but it got to the point where I felt like someone had kicked me in the gut.  I wonder if I should retry it??  Have you had any stomach issues with Plaquenil?  My rheumatologist wants me to try Humara but so far my insurance company has denied it.

[Trooper]

Rose:

I've never heard of Feldene.  I just looked it up and it's a NSAID??  I take a ton of ultram.  Maybe I'll ask for a rx to try it.  Do you mind if I ask how much you take and how severe your pain was before you started it?  Thank you.

[Suslew]

Plaquinil did not work for me, massive head splitting migraines and nausea with vomiting.  I would vomit a little in my mouth at unexpected times.  So disgusting!  And it made me depressed, more depressed than I have ever been in my life, lost all hope and no reason to go on.  Took it for about 2-3 months. 

Doc put me on rituxan and it helps with fatigue, joint pain, peripheral neuropathy, but not dryness.  I have had about the same response as Julia at her blog reasonably well.  Check it out if you haven't.  I had the same level of profound fatigue that you are experiencing.  I am not my old normal, but I can enjoy my life.

I just started curcumin (tumeric).  875 mg tab, 1 x per day and it seems to be helping with a few things. Time will tell, but maybe worth a shot. 

Whatever you decide, Try one thing at a time, so you know what's working. 

[LucyD]

Hi Trooper, I am glad you received so many great responses. You are certainly not alone. You can count me in on the fatigue, too, and it is my most frustrating aspect of this disease. I am so tired tonight, I feel like I don't have the energy to go upstairs and get ready for bed.  As Elaine said so well, the three main symptoms of autoimmune disease, especially Sjogren's are fatigue, pain, depression and then there is there horrible dryness with Sjogrens that causes other problems. Heck with the horrible fatigue and pain, who wouldn't be depressed. I get upset when I am so tired, I can't think quickly at work. It is as if my brain itself is fatigued. Often, I make it through the work week, only to sleep 12+ hours at night on the weekends and then take a three hour nap on Sat. and Sunday, and yes, I feel like life is passing me by too. I have been wanting to strip wallpaper, paint, and do all sorts of things to spruce up the house, but just don't have the energy. I feel like I am losing out on friends because I am often too tired to do fun things with them. I, too, feel like I am dying from the inside and no one really understands. I am feeling like an old lady who is rapidly approaching old-old age, and I am only 62. I have been aware that I have been so much more tired that everyone else around me for a good 30 years, and I have tried to hide it and overcome it.

A66eyRoad, I loved your response about the shower party and lying on the couch for four days with sticky punch cups. I can relate. Glad you rested instead of cleaning up. The mess wasn't going anywhere, right? Have to pick and choose. I push through with events like that with my daughter, too because I want her to have happy memories.

Jenny1960, your post was encouraging about giving up gluten.
I have begun reading a new book by Sarah Ballantyne entitled The Paleo Approach about increased intestinal permeability and the paleo approach to healing autoimmune disease. It is not as simple as changing our diets, but she believes that there is a three-prong lead-up to AI disease: genetic predisposition, an infection and or toxic exposure that puts us one step closer and then a "leaky gut" or increase intestinal permeability which allows protein compounds that are not supposed to get through our gut barrier to get through into our blood stream that set off all sort of autoimmune attacks on our bodies through molecular mimicry. It all make a lot of sense. I want to try the paleo approach, but know it will be very tough. If it works, it will be worth it. She is a medical biophysicist and in the book she writes extensively about science and chemistry behind all of it.

Not trying to push the book but was very impressed and excited about it because she provides so much research and science to explain how it happens.

To all of us who are so darned tired - I hope we feel better soon. And we can all support each other and know we are not alone.

I am sorry - I am not trying to take over your post. Just wanted to really express that you are not alone and many of us suffer with this and understand.

Love and healing to all of us.
LucyD

[soycoffee]

Trooper, I would like to chime in. Three months ago I started a mostly vegetable diet; occasionally tuna, not strictly paleo, but gluten free, lots of veggies. I then got tested again for Sjogrens, and came up with a negative ANA, although I still tested positive for SSA (I've never tested positive for SSB). I think because I once satisfied the necessary criteria for Sjogren's Syndrome, that I will always be a Sjogren's patient.

The new diet does boost energy, not a mega boost, just that when I want to move around my apartment and make some changes, it is just easier to make the effort. What is still very draining is two days in a row of bus trips that consume 1 1/2 hours each way. They are for medical appointments, and sometimes I can get rides, but not always.

Also, I have a prescription for Modafinil, 300 mgm /day, for the fatigue that comes from sleep apnea, but I realized I have gradually let the prescription run out without refilling it.

These seem to me to be effects of the high vegetable, low meat/fish, diet (Paleo? Semi-Paleo?) and going gluten free. I wouldn't say I have lots of energy, only that I use fewer supports for fatigue than I did six months ago. Really, the energy comes in bursts that keep me up all night for a couple of days, and then I crash. Don't know what that is, or whether the pattern will continue.

I do take liquid B12 5000, 1 milliliter at a time, from a dropper, and a bunch of other supplements. And yesterday I sat in my rocker-recliner all day and watched ION television -- the series where the former crooks go about setting things right, helping people who have been victimized. Hmm.

That's my complex renewal of energy, at this point.

Before these changes in diet, going gluten free and mega vegetables, this past winter, I was pretty much immobile. I guess you could say I'm in recovery from immobility, with some lapses when I just veg out.

So the dietary changes people are trying on this forum do seem to work for me, or at least they work for me sporadically, which is better than total fatigue and immobility.

All the best,
Soycoffee

[A66eyroad]

Yes, the Plaquenil did give me stomach problems, but I've learned to take the pills with my biggest meal of the day, which for me is supper. I also swallow them with a bite of food to make sure they go all the way down. Also, I take carafate whenever my stomach starts hurting.

[Carolina]

Hi again Trooper,

It would help me if you added your diagnoses and medications and other ways you are already managing your conditions and symptoms.

You put it in your signature line.   See mine for an example.

Hugs,  Elaine

[Suslew]

Hi,
The blog below is going to have a 3 day series about fatigue starting Monday, written by Dr. Sarah Schafer.
http://reasonablywell-julia.blogspot.com

[Carolina]

When I became anemic, I was a basket case.

Now I take iron twice a day.

Hugs,  Elaine

[Trooper]

Thank y'all for all of your suggestions.  I am making some changes to see what works.  It's been a long couple of years but the last 6-8 months have been just brutal.  I also start Humira tomorrow so we'll see how that goes. 

Elaine- I saw your note about adding a signature line.  I will do that.  Thanks.

[bloodless]

You hit hot button topic Trooper. I know exactly what you are talking about. I really hate when I'm advised to exercise to get energy. If I had the energy to do that, I wouldn't complain about it. I'm taking retalin twice a day. It helps, but still dragging. My doc recently suggested fetzima, but I haven't decided if I want to try it. I looked it up and one of the side affects is excess energy. I'm not depressed, but excess energy sounds good. I might ask my doc about provigil suggested by someone else. That one looks good.

[Trooper]

Bloodless,

Thanks for your response.  I've never heard of Fetzima.  I will add it to the list of possibilities to ask my GP.  I've taken Ritalin for years and it did at least allow me to get some work done during the day but I can't be on it because it increases your heart rate and I've got some heart issues going on.  I've heard of Provigil and it does not increase the heart rate so I was going to ask about that too.  Let me know if you start it and if it works for you.  I'm ready to try anything at this point.