Suddenly much worse.Please help

[kathylee]

I've never had anything like this. I was so scared of how I felt on Friday I called my doctor and asked for steroids for the first time. But by Sunday nite I couldn't sleep at all. I stopped and got almost 7 hours lastnite but am barely at work today. Found out my doctor is out of town too until thursday (family doc). I am between rhuemys and if I call my main university hospital doc I am afraid she'll want to see me which is why I'm in this soup....doing too much...appoinments, moving, partime work plus more job search cause the agency put pressure on me at time of move to turn in more job search data ( I am a temp). I rested all weekend only going to my granddaughters birthday party Sunday. Had to leave early cause I crashed so badly.  think my anemia may be back cause I had s sore tongue most of last week. Also had a sore show up in the corner of my mouth on Friday. Havent had that for well over a year or more. Friday my whole body hurt plus my lungs ahd the thing they get when I can't breath added to the feeling of ache all thru chest area. I've had some of these individaully or to lesser degree, but like this.

If anyone has experience with this or thoughts I'd sure appreciate it.

[Annj5]

Hi Kathylee,

I'm so sorry that you are feeling so crummy right now!

I don't have the answers to all of your questions, but we have some wonderful moderators here who can give you more specifics.

I am wondering about your inability to sleep making everything worse. When you called your doctor, did they prescribe prednisone for you? Steroids such as prednisone can definitely add to problems sleeping, especially if you take it late in the day. If you are taking this medication, be sure to take it morning or early afternoon at the latest.

It also sounds as if you are really stressed right now, too. Stress plus lack of sleep isn't a good combination for health.

I hope you can get some answers soon. Hugs,
Julia

[Linda196]

Kathylee, from the descriptions of your symptoms, 2 things come to mind. You could be coming down with a virus (not everything we experience is caused by SjS); or you could be experiencing a flare, possibly brought on by the extra activity and stress.

Julia is right about steroids and sleep...if you did get an order and started taking them Saturday, that could explain the problems sleeping. By taking them as early in the day as possible, you may avoid that.

I hope your GP can determine what is causing you to feel so terrible, and treat you effectively.

[Scottietottie]

Hi Kathylee 

I'm thinking pretty much the same as Linda. Stress makes everything worse and you sound as though you have a lot going on right now. Deal with priorities and let the rest take a back seat. easier said than done, I know.

I hope your GP can reassure you. If it's SjS flaring, steroids seem the way to go - if it's a virus - it will run its course. Hope you feel better soon.

Take care - Scottie 

[navydad]

When I was Dx;ed with a immune system deficiency,, I thought all my troubles were over,, I;ll get what I need and get better,, then I got Dx;ed with SS on top of that,, again I thought I;ll get this under control and life will go on,, WRONG,, then the DX of vitamin B12 deficiency,, OK,, we;l take care of that,, ,, the point of all this is I know how you feel,, I am constantly in fight or flight mode,, I don't sleep well,, everyday is a challenge to just get up and (attempt) to go to my job and be what I am,, a Electrician,, its hard and its no fun at all, I used to love my job,, now I loathe it,, by the end of the day I am totally wiped out from work and fear,, my eyes hurt constantly,, my mouth is a mess,, my stomach doesn't work anymore nd the tingling in the legs is driving me crazy,, I want to walk normal again,, Sometimes we have to be pushy to get what we need,, were special people who have special problems, and need to be treated special,, we just don't come down with common colds that run there course,, we get them and we feel like were going to die,, I have no idea how many infections are in my body right now,, It took over 15 months before I even got any kind of DX,, I was told,, your just having a lot of anxiety,, but I kept pushing for answers,, so if you need to be pushy with doctors,, DO IT,, you have to be your own advocate,, if you don't your just one of those thousands of charts on the shelf,,

[Skylar]

((((HUGS)))) I don't know what else to say, but I hope you find some relief.

skylar

[Pooh]

Kathylee,
I am so sorry you are having such a rough time of it.  It sure sounds like a flare to me, but don't assume that is what it is.  If your breathing problems get worse, please, by all means see your doctor. 

Take care and rest when you can.

Pooh

[JannaLee]

To KathyLee from JannaLee

I have been worrying over you all week.  I didn't post because I had no advice.  But now I'm posting because I have buckets of concern. 

How are you doing now?  What happened this week?  Are you better, worse, or the same?

Finally it is Saturday and you can rest some. 

Wishing you wellness and a better week dear friend.

[kathylee]

Jannalee
Thanks for the concern. Sorry I haven.t responded. I still don't have internet at home so I,m limited to writing here on breaks at work. The steroids and cutting way back worked. I did nothing last weekend....which was hard and lonely. And even this weekend I did not go visit my grand kids which is painful! But I did get some declutter done which is good for me too and hair washed and tanning done. Obviously I now realize I was behind on my vitamin D tanning routine and I hit the baby spinach cause my mouth sores indicated anemia again. This all worked since by last Friday my body strength and thinking was normal.

Thanks again,
Kathy

[Pooh]

Good to hear you are feeling some what better.  Every little bit helps with this disease.

Take care and don't overdo, rest when you can.

Hugs, Pooh

[irish]

kathylee, I am amazed that your autoimmune issues arn't made worse by tanning. The sun is a no-no for most people with autoimmune issues. I have read that the sunlight on our skin can affect the blood in our body by getting through our skin. Sounds strange but yet not---I guess this ramps up the autoimmune system and can increase our flares which is certainly documented by many people here who get worse with sun exposure. Just curious how you manage to get along? Irish

[kathylee]

I wouldnt be working if not for the tanning! My reseach indicates that 40-50% of those diagnosed with Fibromaylgia really are undiagnosed viatmin D deficient. Just this week they found out the sudden onset cataract I have is caused by the hyperparathyroidism caused by the severe low D. When your D is low the parathyroid kicks in to make sure your body had the neecessary calcium and it takes it from your bones! I have tanned since 2006 and have only experienced massive improvement in greatly increased leg strength ( this is documented at Mayo clinic website) greatly improved sleep and a 75% pain reduction or more. If I could take a vitamin D pill believe me I would but I'm so chemically sensitive it doesm't work. Believe me I've spent a small fortune trying. The other option is a shot they wanted me on which is 50,000 units once a week. My experince with how reactive I can get on a small dose of viamin D I can only imagine how awful this would be. There is a fair amount of research out there on the link between vitamin D deficiency and autoimmune disorders. Part of the issue is I believe is doing the tanning intelligently. The book UV Advantage covers this well. Your body only accepts the vit D for about 10 minutes. The body actually shuts it self off. To tan beyond that IS unnecessary and dangerous certainly. My Rhuemotologist prescribes the tanniing for me and this is thru the university hospital..the senior doctor not a student.