I just saw your mention about spicey foods and red pepper flakes in another post. I have severe Raynauds and for me in MN 'the season' has come early. Coldest Oct. on record here since 1917. Anyway, I also have irritable bowel syn. so the spicey foods are out (at least on a regular basis, I binge and suffer once in a while). Anyway, do the red pepper flake capsules bother the stomach too? I've tried 2 prescription meds and neither helped.
I really do not know much about the red pepper flakes but I to have irratable bowel syndrom. Does this have anything to do with lupus?
How do you get along when it is cold? I have very mild weather hear and when it got to 56 and 64 degress I was old, but today we are back up to 78. Never adjusted. I think I would love snow we rarely have any here. Must be beautiful at Christmas. Please over look spelling.
scbagrrrl mentioned the pepper flakes in another post and that it helps the Reynauds. I'm not sure if IBS is related to the Lupus or not. I have had IBS for many years before I was dx with all these autoimmune disorders. I didn't know there was a relation, but so many people with AI diseases, not just Lupus ones, seem to have it too.
As for the Raynauds in MN........ it's tough. I have to have my car warmed for about 15 min. before I go anywhere. I have to often park my car in handicap parking cause I have to come out and start it and run back in the store while it warms up (It makes it extra tough when you're so fatigued from all the other stuff). Just walking a very short distance can turn them white and painful. I am no longer able to enjoy any of the fun things that come with snow....... making angels, playing pie with the kids, snowmobiling, ice skating, etc. I've become very paranoid about driving in winter, for fear if I go off the road (easy to do with ice & snow), or have car trouble, I might end up having my feet & hands amputated. It may sound like a lot of negative thinking, but very realistic around here in winter. The winters have always been a bit too long, but now it seems forever. Sorry about the whining.
I read one of your other posts when you were talking about symptoms. So many of these diseases have overlapping symptoms. One of the other ones I have is Rheumatoid Arthritis, but not even the Rheumy can tell me if my joint pain is from the RA or the Lupus. He did rule out fibro in my case by testing the pressure points. Did you mention lessions? If it was you, could you describe them? I also have very itchy spots on my skin too, but no burning. My skin is very dry and doesn't heal worth a hoot......... lupus, scherloderma (?). Who knows. It seems it doesn't really matter too much what it's from cause they prescribe the same treatment for most of these diseases anyway. Take care, Ann
[This message has been edited by Ann S (edited 10-27-2002).]
I understand , I to was whiny last week. I have similar reduction in activities. I use to swim with my children I grew up swimming since I was two. To me the water is cold. My kids son't think so but it seems to hurt to the bone to me. I use to go out and play baseball as a family but this summer I had alot of pain in my hands and wrist. And run LOL. It is so hard for me not to do these things. There are times I can not pick up my cast iron pots from the cabinet I have to get one of my kids to put them on the stove. I do get some energy on some days, but still can't lift. I do not want to give in, i do not think I can my family depends on me the most. I have very ichey skin to. Sometimes it drives me crazy but you really can't see anything wrong some times a little red. I have order the royle jelly from the Bee Alive company they have a web sight to try and get more energy. I think it does help if I take it consistantly. I have read where people have moved due to cold weather. I told you how it cold to me hear at 61 last week well now we are back in the 80s. you get up and it si about 65 and some days it will be 87 by 4:00 in the afternoon. I guess the warm is better for me. Than cold. I am sorry that your limitations are growing but I most say you have them covered. Thanks For talking I think sometimes I am selfish for feeling sorry for my self and I try to keep it to my self.
My first clue was when my finger tips would turn stark white as soon as I went outside, and sometimes even in my house if I would get a chill. Then, when warmed...........severe pain.
Prior to that, my hands would be totally numb and tingly when I woke up and would sometimes stay that way for at least an hour. I'm not sure if this was connected to the Raynauds, my carpal tunnel, or my vascular occlusion though. Probably it was from all of them together. Ann
Do you think that it is carpal tunnel in the hands or it is really lupus? My doctor had an MRI on my brain to make sure I did not have something there for some of my numbness. My hands get numb sometimes, my feet and hands will feel so cold they hurt but not white in color. The docotr suggested it might be carpal tunnel in my hands. But it comes and goes.
Did your Dr. put some drops on your fingernails. I guess that helps figure out if it's Raynauds. Also, did he do the carpal test where you bend your hands together at the wrists for a while and see if the numbness comes. Mine also did the carpal tests where they put needles in your muscles of your hand & arm and also do an electric shock thing too. (I can't remembet the technical names for these.)
Another possibility could be vascular occlusion, which is a blockage in the veins of your hands. I have this too. Anyway, I suggest you have more tests to help figure it out before you go with any serious treatment.
I still think mine is a combination. The carpal runs in the family and I've had it for years. It only bothered me periodically, till the last few yrs. I did have the carpal surgery on my left hand last spring and it was awful for me. It wouldn't heal and the swelling wouldn't go away. When they tried massage therapy & ultrasound, I had a reverse reaction and the swelling and pain got worse. Some of the carpal symptoms are better in it (the numbness at night), but now it's more swollen & painful more often. The lupus & RA had a lot to do with the healing process. Also, the inflammation from the RA & Lupus made the carpal symptoms worse. It's a never ending circle...... I'm glad the numbness symptom is better, but I'll never have my other one operated on for carpal as I had intended.
Good luck, Ann
[This message has been edited by Ann S (edited 11-03-2002).]
Hi Ann Thanks for letting me know. It is great to hear for you. I have not said much to my rhem. about my cold hands and feet.
I did ask him along time ago about my hands feeling numb. He said it might be a reaction to cold med. and my other meds. But I have noticed that my feet, even with socks and shoes will feel really cold like they are in a cold draft when it really is not cold.
My family doctor had an MRI to check for MS due to the numbness and blurring vision I have at times, but it was negative.
I feel like I have so many symtoms, come and go, and change. It is hard to keep up. I feel like when tests are negative they must think I make things up.
I have had a back ache on my lower right side that the doctors tell me is a mucsle spasm. I really don't think it is. Have you had any kidney problems. I go to the rhem. Thursday. and the gastrologist on th 13th of nov. I am Sorry I started out small and now I have rambled on.
I don't think you need to worry about the Raynauds, unless it's causing you problems (like if you lived in MN) ........it's not one that progresses into other serious concerns as far as I know. Regarding the kidneys, I've had some blood in them which they followed up on, but didn't find a cause. The rheumy stated right away that he didn't think there was a connection. I think Lupus has to be somewhat severe before it affects other organs.
Don't apologize for being concerned about all your symptoms. I blew off so many for years by making other excuses for them and not seeing a Dr. about them. It turned out a lot of them were connected and I could understand & accept so many more things then. Sit down and make a list of everything before you see the rheumy and show them to him. Keep in mind that sometimes when we're over-worried, anxious, or stressed, we notice things (like pains or sensations) that normally we wouldn't give a second thought to. Before putting them on your list, think about whether they've occurred, or you've noticed them more than once, and maybe over a span of a month or so.
I was wondering what sent you to the rheumy in the first place? I thought I read that the Lupus dx was a new one for you. If I may ask, what's the gastro one for?
Great to hear from you!
Last year I got sick, swollen joints, fever, adnormal fatigue, rash that iched. My family doctor said it was viral, and if not betterin 2 weeks come back , which I did. He still thought it was virual but sent me to the Rhem. at that time I had a borderline ANA, but he did confirm that I had the parvo virus b 19. Never heard of it, but the treatment was celebrex, transadone, he later switch me to bextra. The gastrologist was for changing in bowel habits, and pain. In between, I went for my annual visit to my gynocologist, found a cyst on overy and then had a hystorectomy, and lost one overy. He thought this would reduce my pain, he also tacked my blatter. This really upset me I wanted another baby. I see the rhem. about every 6 weeks to 8 weeks. He has mentioned lupus alot but wasn't sure, he feels very strongly that it is lupus. The symptoms continue and the virus should have run its course. He has added planqil (sp) to my meds. I am not sure it has started working yet but is has only been about 6 weeks. I have been meaning to make a list. My legs swell alot at night before bed, and then are back to size in the morning. He said he thought this is due to Meds. I have notice that I think I am holding fluid all over. Some days I look skinner that other days, my size even changes a whole size, and my wieght remains about the same. My back has really been hurting me. I even hurts to breath some times. I go to see him on the 7th. and the gastrologist on the 13th. It really is nice to talk to someone who is familiar with this. Alot of times I am not sure if it is lupus, or something else.