sores all over my head, arms and legs..
- micklady
- ebennett
- Tery01
- ebennett
- ebennett
- micklady
- ebennett
- hurricaine
- selaine99
- TamTam7
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» micklady - Re: next steps??
In response to message posted by ebennett:Good morning and hello Beth! Glad to hear you are getting some answers with the docs! Yes the Lupus can sometitmes be controlled. I have been very lucky with my Disease progression so far.
Here are my suggestions that worked for my.
1. OMG those headaches, remember them well! I still get them but not to the extreme. As you get to knoe your body, your will sense the onset of one and I take antiinflams and pray! I would get a headache everyday at about 3pm in the afternoon, sometimes so intense I could not drive home, and they would last for days. My eyes would become blood shot, tears would runs down my face, NAUSEATED big time, lights would hurts my head and the hairs on my head would be so painful. I have been able to control them. I did get some doozey's every now and then but not every day!
2. Work issues. I went from a 12 hr day to 4 10 hrs days to changing my job that was too stressful and not helping, to a new job 8 hrs days. Also with the onset of my disease I tried to take a day off in the midle of the week, so I only worked 2 or 3 days and then had a day off!
3. I found a really good book the explores Alternative Therapy's for lupus. Talks about everything , found it very interesting and I have incorperated many of the suggestions into my life! And they have worked! Called "Lupus Alternative Therapies, that really work" By Sharon Moore.
So hang in their and YOU can gain back control of your life!
-- posted by micklady
» ebennett - Re: Re: next steps??
Thanks!I have the Sharon Moore book from the library- it's sitting right here by my computer so I can summarize a few things before I return it. I also sound the one "Thriving with your autoimmune disorder" but can't remember the author.
I will talk with my husband this weekend about my work- his job is terribly stressful too but maybe he can pick up a couple of the household chores. I'm the kind of person who feels all disorganized internally if my environment is a mess- and with a 5 year old, it often is.
I also probably need to talk to the person I work most with and my boss about the limits of my job. It has gotten so I run the place, and that's not in my job description!
Any ideas for the brain trouble? I have terrible word-finding problems and worse memory. (Maybe you answered this already and I forgot....)
The headaches for me aren't as severe as yours, I think. These are the dull kind where I keep going but act cranky! Those quick-dissolving Excedrin under the tongue work wonders. I'm sure it's the caffeine in them that helps so much.
I find that I handle stress so poorly, too. Stuff that used to be like rolling off a log stresses me out big time, I don't do it as well, and I feel pooped afterward. Feel like a great big whiner-baby.
Thanks for all your help!
Beth
-- posted by ebennett
» Tery01 - Re: Re: Re: next steps??
In response to message posted by ebennett:I know what you mean about feeling disorganized when your house is a mess!
I cannot go in my room and lay in my bed and read magazines and relax until I clean my room first.
It is truly a different feeling when your home is organized and or cleaned.
I have a 4 year old, so I know where you are coming from, but remember that there are other moms in that class, so don't over do it.
I have had the severe headaches that would stay with me 24-7, although I still have them they are not so severe right now, thank goodness. I tried everything but nothing worked, but a good glass of wine!
LOL
Right now I think I am going through a Period Of Wellness, I have my pains here and there but I am feeling better than usual. So I am enjoying it while it lasts.
It is tough to get a proper/solid diagnosis, I know. I have yet to be diagnosed and the last time I saw a Rheumy was like Three years ago and at that time all these pains had just started. It was the beginning of it, so they diagnosed me with CFS, and now I feel like it is either Lupus or Fibro.
Just pace yourself and tell family and friends how you feel and what you are going through. It is the hardest thing to do, my friends just don't get it and when I cannot do something or go somewhere they are like Why? Well the so and so isn't until next week...it is just amazing.
But hang in there. You will recognize your boundaries and believe me you will get tougher and tell people to back off. It takes awhile.
That is good that you are going to talk with your boss. Good Luck
-- posted by Tery01
» ebennett - Re: Re: Re: Re: next steps??
In response to message posted by Tery01:Hi Tery,
Thanks for your reply. I seem to have good days and bad days. The Chinese Herbals are helping al ot with some things- less so with others. If I do talk to my boss, any pointers? How much should she know? I don't even have a dx.
Yesterday I was a big lump all day- even took a nap. Today, I got a lot done, but now I have the Sunday night blues because tomorrow it's back to work.
I've noticed that the grocery store really confuses me- there's so much light and sound and smells- and I'm trying to keep track of my list and my coupons and the cart and sometimes my 5 year old....it's overstiumlating. It seems like my threshold has gone way down- have you or anyone else ever experienced that?
I found this great green-tinted concealer from Physician's Formula that really covers the red spots on my face. Works better for me than the plain tan-colored ones.
Anyway, thanks for the support.
Beth
-- posted by ebennett
» ebennett - Re: Re: Re: Re: next steps??
In response to message posted by Tery01:Hi-
I actually talked to a friend at work about my health stuff- it was hard since I usually am all stoic at work, but I'm glad I did it.
A coworker of my husband's has lupus and recommended her rheumatologist. I also have a list from the local lupus foundation. I think I'll go with the personal recommendation- seems like a good way to go.
Any suggestions for a first visit to a rheumatologist?
Thanks., Beth
-- posted by ebennett
» ebennett - Re: Re: Re: Re: Re: Re: Re: aren't i just looking pretty.lol !!
In response to message posted by hollyrw:
Hi Holly,
I go to the rheumatologist next Thursday, finally. I'll be interested to get yet another opinion. Meanwhile, I have found a couple of great products that have made a big difference, and I wanted to tell you about them since you seem to have similar skin to mine. Dr Hauschka facial stuff is very $$ but makes a huge difference. After a few days the roughness was gone and my skin felt so smooth and dewy...I did get a few little hives from the fragrance but those responded to the hydrocortisone and were worth it for the overall effect. It can only be bought at health food stores and salons. Then I found (again, health food store) StonyBrook Botanicals fragrance-free and oil free shampoo and conditioner. That reduces the hives (or whatever) in my scalp. I really like these products. I hope you can find them where you are, and that you like them too.
Take care, Beth
-- posted by ebennett
» hurricaine - Re: Re: Re: Re: Re: aren't i just looking pretty.lol !!!!!
In response to Re: Re: Re: Re: Re: aren't i just looking pretty.lol !!!!! posted by micklady:I have been bothered with severe scalp itch and sores since last October. I have seen doctor after doctor and can't get a diagnos. The bumps feel liked raised bites similiar to a mosquito bite. The itching is very intense and is usually more severe at night. There's not a doctor out there that can help. I've had all kind of blood work and it doesn't show anything.
-- posted by hurricaine
» selaine99 - sores on the scalp
In response to sores on the scalp posted by ebennett:Try using Free & Clear Shampoo made by Pharmaceutical Specialites at www.psico.com or ask your pharmacist. There are also products by the same company for lotions such as Vanicream and soaps without dyes, fragrances, etc. These are offered by the Mayo clinic. Stress and lupus create many skin problems. Hope this helps.
-- posted by selaine99
» TamTam7 - Re: Re: aren't i just looking pretty.lol !!!!!
In response to Re: Re: aren't i just looking pretty.lol !!!!! posted by Tery01:I just thought I would let you know that alot of the vitamins that you buy in the stores don't really work. I order vitamins from a company called Nature's Sunshine and there are other ones out there too. I would suggest even buying your vitamins from an actual health store. Most of the vitamins that are sold in stores are made with salt and your body will only allow so much salt so then it just starts getting rid of it (which means the vitamins go too). Some of the better vitamins are made with a sugar coating so that your body doesn't kick it out. Another suggestion is that you take your vitamins right before bed. I've heard that your body absorbs them better that way. Obviously you can't take them all before bed but at least the ones you can. Give this a try and let me know if your levels increase at all. Good luck and God bless!
-- posted by TamTam7
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