Question:
<< I’m wondering who you were responding to down below. I have some of the same symptoms of those you quoted, like: having mini pains, not a flare during my period, numbness and tingling in feet after being on them for a while, heat does indeed intensify the effect of the sun for me, and my legs do get stiff after standing.>> I was responding to the person who wrote the original post. It’s interesting though that you’ve noticed the same thing about heat intensifying the sun’s effect. I wonder how many other people have noticed this? Sandra
Response:
I think the sun effect is relatively small on me *unless* there is also lots of heat. I went for a walk in the hot sun one morning about six weeks ago, and the sun/heat got to me, even through a hat, long sleeves (to my fingernails) and sunscreen. By afternoon, I was running a temp, and by evening I had flu symptoms (minus the flu), that lasted five days. For me, flu symptoms are largely exhaustion and joint aching, especially in my fingers. Sure was hard to keep up with life during that time. In article <19990728221009.01179.00000…@ng-fd1.aol.com>, scroyle…@aol.com (SCroyle909) wrote: > It’s interesting > though that you’ve noticed the same thing about heat intensifying the sun’s > effect. I wonder how many other people have noticed this? > Sandr
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Response:
. It’s interesting > though that you’ve noticed the same thing about heat intensifying the sun’s > effect. I wonder how many other people have noticed this? > Sandra
I also have much more difficulty when it’s hot. Until my diagnosis in April, I thought I was just heat intolerant. I also have more symptoms if I am active outside than if I’m sitting, even with long sleeves, hat, etc… For a while I just thought I was crazy because I’d be sick after a short walk, but I could exercise inside for a much longer time. I am doing much better now that I know to stay out of the sun, but it’s hard on our family outings. My kids miss the outdoor pool and trips to the zoo, park, etc… Gretchen Sent via Deja.com http://www.deja.com/ Share what you know. Learn what you don’t.
Response:
SCroyle909 <scroyle…@aol.com> wrote in article > I was responding to the person who wrote the original post. It’s interesting > though that you’ve noticed the same thing about heat intensifying the sun’s > effect. I wonder how many other people have noticed this? > Sandra
Oh yes! Summer is a bad time of year. My symptoms are much even though I stay indoors during the day – catching a bus from work to home can be very unpleasant because I step suddenly from an air conditioned building into a wall of heat, even though twilight is beginning. I become quite ill by the time I get home. Kate
Response:
Sandy, I’m wondering who you were responding to down below. I have some of the same symptoms of those you quoted, like: having mini pains, not a flare during my period, numbness and tingling in feet after being on them for a while, heat does indeed intensify the effect of the sun for me, and my legs do get stiff after standing. Linda – Hide quoted text — Show quoted text -SCroyle909 wrote: > >>In the past I have had some nurological problems that had the doc think MS. > (numbness, tingling, minor difficulty walking, but nothing serious) There is > the possiblity of FMS.>> > There are indeed a lot of similarities between CNS involvement of lupus and MS. > In my daughter’s case, there was some initial confusion over this; however, a > positive anti-dsDNA cinched a lupus diagnosis. > >(~I do have a red rosy cheeks since I was a late teen.)>> > My daughter also has rosy cheeks which leads many people to exclaim at how good > she’s looking. Anyway, we’ve found that sunlight, computer use (I have no idea > why) and prolonged exposure to florescent lights all tend to make it worse. > >~Dizziness/.poss. virtigo>> > Vertigo is a spinning sensation. This is also a common symptom of CNS > involvement of lupus, though it could also be a common symptom of some other > conditions. > >>~sinus-like pain and my eyes and cheeks get puffy. This is especially so > when I go outside. I think that it has more to do with the heat than lighting. > Interesting that you said this because I’ve noticed that heat seems to > intensify the effect of sunlight on my daughter’s lupus. She starts having > symptoms faster on a hot day than a cool one. Also, it’s even worse if she > doing an activity in the sun rather than just sitting around (not that we any > longer permit her to sit in the sun). > <<my face turns bright red and swells when I am hot and it starts itching like > mad too. I wake with my eyelids swollen – especially the right side – quite > often…. though how a doctor would document *that* I have no idea. >> > Much of this you could document by taking a picture of it with a good camera. > >>~I think that it was worse during my period.>> > My daugher also gets mini-flares with periods. I hear that’s pretty common. > << If you think there’s a correlation then perhaps you should keep a diary for > a couple of months. Take daily note of your > symptoms and even things that you might not think are related >> > That’s an excellent suggestion and it’s something we did ourselves with a lot > of success. > >>~Stiff legs, especially after standing for a long time.>> > That’s kind of a vague complaint, but then that’s the problem with trying to > diagnose lupus–so many of the complaints are vague and hard to pin down to a > specific cause. > >>~Ankles are sore…heat helps. No swelling or redness.>> > >>One of the characteristics of so-called lupus arthritis is the fact that it > is often *not* accompanied by outward signs. But that doesn’t mean that’s what > you have.>> > That’s true. My daughter’s rheumatologist says that the looks can be very > deceptive, and there can be a significant degree of disability from joint > symptoms even without any significant swelling. For the record though, slight > swelling in the knees and ankles can be very difficult to see. In my daughter > it’s often only a very slight puffiness. > Sandra
Response:
I hope you do find some answers. Do you have a good rheumatologist nearby? Who is following you? What kind of answers are you getting there? Your symptoms sound like many disorders. I think that the most important thing I can tell you without having finished medical school and without knowing your history is to not let anyone think that this is in your head. If you are feeling these things, keep searching until you find the answer. I had to go to MANY different doctors and specialists before the confirmation of lupus was secure and before I believed that SLE is truly responsible for my problems. When certain doctors told me I was fine, just anxious, then I kept searching utnil someone did know the answer. I highly suggest that you seek a doctor who specializes in connective tissue diseases. If, for some reason, this is ruled out, perhaps try an good Internist who may be able to piece everything together and send you to the next appropriate type of specialist. Good luck. We are here for you; you don’t have to have a diagnosis to have people who understand you and how you badly you feel. Love, Heather
Response:
On Mon, 26 Jul 1999 00:49:31 -0400 (EDT), Minervam…@webtv.net (Minerva La Fay) wrote: >i am trying to figure out what is going on with me.
amen! :) >In the past I have had some nurological problems that had the doc think >MS. >(numbness, tingling, minor difficulty walking, but nothing serious) >There is the possiblity of FMS.
FMS might cause these symptoms… so I’m told. The problem with lupus and related diseases is that they do mimic MS and other things that are confusing for docs. You should be getting a referral to a rheumatologist if you and your primary doc feel you have symptoms and labs that indicate a possible problem. Have you had any of the standard "rheumatoid" labs done? ESR, CBC, SMAC, ANA, Urinalysis? >Now, I have these questions that I would like to have some sort of >answers to. I am wondering if there are any one here that is familiar >to these problems that I am experianceing; >(~I do have a red rosy cheeks since I was a late teen.)
This could be related – could be "rosacea" which some people have with or without lupus (and isn’t limited to that acquired by drinking too much). It’s similar to the lupus rash in some respects but can be differentiated with a biopsy. For this you should probably see a dermatologist. >~Dizziness/.poss. virtigo
??? Don’t know… I’m not familiar enough with the Central Nervous system effects of MS, or lupus. >~sinus-like pain and my eyes and cheeks get puffy. This is especially >so when I go outside. I think that it has more to do with the heat than >lighting.
I get this to some extent – not so much pain but my face turns bright red and swells when I am hot and it starts itching like mad too. I wake with my eyelids swollen – especially the right side – quite often. Often my tongue feels swollen – like there’s not enough room in my mouth for it – though how a doctor would document *that* I have no idea. 
>~I think that it was worse during my period.
My symptoms are definitely worse (except the fevers) a few days before and in my cycle. If you think there’s a correlation then perhaps you should keep a diary for a couple of months. Take daily note of your symptoms and even things that you might not think are related (sudden increase in appetite can signal a change in your hormone levels, depression or anxiety can indicate the same). keep track of your period along with this diary. If you want to go all out, take a basal temp every morning – when you *first* wake up and before you have done so much as stretched and yawned. Seriously. This will help a doc see what your hormone cycle is like if you think there’s a correlation. >~Stiff legs, especially after standing for a long time.
could be related – could be arthritis, could be poor circulation.. is your b.p. high or low… I have a very low b.p. and my legs get very stiff after a few minutes in any one position. I walk like an old lady when I get out of a chair – my family laughs at me so they don’t cry. >~Ankles are sore…heat helps. No swelling or redness.
One of the characteristics of so-called lupus arthritis is the fact that it is often *not* accompanied by outward signs. But that doesn’t mean that’s what you have. sound to me like you need to get labs done and a general history written and have a good long talk with your primary doc. Some doctors can be warned that this is going to be an "extended" visit. My daughters doc does this and he’s great about it. For more info on Lupus please see the ASL frequently asked questions and look at section 4 – it has many good links for accurate lupus info. http://www.ghg.net/schwerpt/aslfaq.htm Best wishes.. kcat
Response:
>>In the past I have had some nurological problems that had the doc think MS.
(numbness, tingling, minor difficulty walking, but nothing serious) There is the possiblity of FMS.>> There are indeed a lot of similarities between CNS involvement of lupus and MS. In my daughter’s case, there was some initial confusion over this; however, a positive anti-dsDNA cinched a lupus diagnosis. >(~I do have a red rosy cheeks since I was a late teen.)>>
My daughter also has rosy cheeks which leads many people to exclaim at how good she’s looking. Anyway, we’ve found that sunlight, computer use (I have no idea why) and prolonged exposure to florescent lights all tend to make it worse. >~Dizziness/.poss. virtigo>>
Vertigo is a spinning sensation. This is also a common symptom of CNS involvement of lupus, though it could also be a common symptom of some other conditions. >>~sinus-like pain and my eyes and cheeks get puffy. This is especially so
when I go outside. I think that it has more to do with the heat than lighting. Interesting that you said this because I’ve noticed that heat seems to intensify the effect of sunlight on my daughter’s lupus. She starts having symptoms faster on a hot day than a cool one. Also, it’s even worse if she doing an activity in the sun rather than just sitting around (not that we any longer permit her to sit in the sun). <<my face turns bright red and swells when I am hot and it starts itching like mad too. I wake with my eyelids swollen – especially the right side – quite often…. though how a doctor would document *that* I have no idea. >> Much of this you could document by taking a picture of it with a good camera. >>~I think that it was worse during my period.>>
My daugher also gets mini-flares with periods. I hear that’s pretty common. << If you think there’s a correlation then perhaps you should keep a diary for a couple of months. Take daily note of your symptoms and even things that you might not think are related >> That’s an excellent suggestion and it’s something we did ourselves with a lot of success. >>~Stiff legs, especially after standing for a long time.>>
That’s kind of a vague complaint, but then that’s the problem with trying to diagnose lupus–so many of the complaints are vague and hard to pin down to a specific cause. >>~Ankles are sore…heat helps. No swelling or redness.>> >>One of the characteristics of so-called lupus arthritis is the fact that it
is often *not* accompanied by outward signs. But that doesn’t mean that’s what you have.>> That’s true. My daughter’s rheumatologist says that the looks can be very deceptive, and there can be a significant degree of disability from joint symptoms even without any significant swelling. For the record though, slight swelling in the knees and ankles can be very difficult to see. In my daughter it’s often only a very slight puffiness. Sandra
Response:
i am trying to figure out what is going on with me. In the past I have had some nurological problems that had the doc think MS. (numbness, tingling, minor difficulty walking, but nothing serious) There is the possiblity of FMS. Now, I have these questions that I would like to have some sort of answers to. I am wondering if there are any one here that is familiar to these problems that I am experianceing; (~I do have a red rosy cheeks since I was a late teen.) ~Dizziness/.poss. virtigo ~sinus-like pain and my eyes and cheeks get puffy. This is especially so when I go outside. I think that it has more to do with the heat than lighting. ~I think that it was worse during my period. ~Stiff legs, especially after standing for a long time. ~Ankles are sore…heat helps. No swelling or redness. Thanks a lot.
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