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Old 05-02-2008, 08:12 AM   #1
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Does anyone else have a mysterious rash with a flare?

The rheumatologist I saw dismissed the rash I've been getting for almost two years (and dismissed the ANA of 1:320), diagnosed me with FM and said see ya with no f/up or anything. I have another "outbreak" today in the same place (neck) along with a flare of joint pain and fatigue. So, I'm wondering if anyone else with FM gets a mysterious rash?

 
Old 05-02-2008, 08:47 AM   #2
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Re: Does anyone else have a mysterious rash with a flare?

I have Fibro....I also have the Lupus rash on my face, but not Lupus. It is ALWAYS there and gets beet red when I get too hot or too stressed. My doc says I don't have Lupus but he said "unspecified collagen disorder" and immuno-suppression.

 
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Old 05-02-2008, 12:27 PM   #3
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Re: Does anyone else have a mysterious rash with a flare?

Yes....I am not sure IF I even have Fibromyalgia...HOWEVER, I had an onset of SEVERE muscle aches, along with my joint in my hip killing me, came out of NO WHERE...once it got soo severe, I went to my PCP, and he said, HE believes I have Fibromyalgia...but he had me come back in a week, to see how I was doing...Needless to say, that week...I broke out on my face, with some STRANGE rash...I was outside bathing my dog, and I was in the sun, and I came in, and my face broke out horribly...REALLY blotchy and alot of pimples, came out of no where...I have a very clear complexion, but I looked like a teenager, with a bad out break of acne...and it was soo blotchy.
Well I went back to my Dr the following week, as he requested, But my Dr. never seen the rash...the rash only lasted two days, after it cleared, my face, got really dry and flaked... Went back the following week, to my Dr., and he said, he had no idea what the rash was from, and my muscles were doing much better, so he said, to wait and see if they totally leave within the next few weeks, and then he would refer me to a rheumotologist(can't spell).
IF I am still having symptoms.
Well it has been almost two weeks, and I am still having the hip pain, and the muscle aches come off and on..So who knows, maybe it is all related since you get a rash too.
Good Luck, and please let me know, IF you figure out what your rash is from..maybe we have the same thing.

 
Old 05-02-2008, 01:28 PM   #4
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Re: Does anyone else have a mysterious rash with a flare?

did you mention the dog bath to your doc...maybe your allergic to the soap!!!

 
Old 05-02-2008, 02:08 PM   #5
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Re: Does anyone else have a mysterious rash with a flare?

:
Quote:
Originally Posted by tiff-cher View Post
did you mention the dog bath to your doc...maybe your allergic to the soap!!!
No,
It is the same soap, I have bathed him in, for years...SO whatever the rash came from, I believe it was from the sunlight?? I hadn't been exposed to anything different, so it couldn't be an allergic reaction..I believe the sunlight just brought it out...not saying it was a reaction from the sunlight..
It was just weird, I had these horrible muscle aches, and joint pain, and then this strange rash..so I don't know?? It is a mystery...When I saw this thread, I though maybe somebody else would know.
Thanks for the advice...I appreciate any info at all.

 
Old 05-02-2008, 03:24 PM   #6
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Re: Does anyone else have a mysterious rash with a flare?

Solar dermatitis might be a possibility. Do you have blond or red hair with fair skin?

Blessings,
Kirstee

 
Old 05-03-2008, 07:01 AM   #7
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Re: Does anyone else have a mysterious rash with a flare?

I have everything you have mentioned...I haven't seen a Rheumatologist yet, my pcp is great and I trust him. The NEW thing I have is extreme leg weakness,some in the arms too but not as bad....that kind of concerns me, I don't know if it could be from all the new meds or what...he has put me on 4 new meds in the last 2 weeks, and my legs have started acting funny since then. One of the new meds is for restless leg syndrome, so who knows??!! I also have an appt with a gyno to talk to talk about a hysterectomy, I have talked to my doc, and he says he thinks that is a good idea and that would help my Fibro....all around make me feel better!!!!!!
I posted a lot yesterday so I really can't remmber what board I mentioned that on so if I'm rambling I apologize...lol...so let me know how you are doing and enjoy your weekend!!!t-c
p.s. the fibro fog is kicking in already this morning!!!!!

Last edited by tiff-cher; 05-03-2008 at 07:04 AM.

 
Old 05-03-2008, 07:44 PM   #8
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Re: Does anyone else have a mysterious rash with a flare?

Tiff-Cher did your doc say why a hysterectomy would help your fibro. I had a hysterectomy when I was 32 and I still got fibro. Now when you are sick with that kind of problem and becoming anemic and feeling just horrible, let me tell you when all is out and everything heals you do feel so much better than before. That has more to do with the fact something that has a tumor is removed and you aren't losing gallons of blood all the time. Sorry about the graphic description. I just would like to know why a doctor thinks having a hysterectomy would help your fibro.

Glojer

 
Old 05-03-2008, 07:52 PM   #9
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Re: Does anyone else have a mysterious rash with a flare?

lynn, I think you should try another rheumy or get another opinion on the ANA and rash business. I have had a high ANA and I have the rash on my face sometimes and on my neck and I have a rough time in the sun most summers. I turn so bright red that people ask if I am ok, they think something is happening to me. It is not a sunburn and I am not fair. Yet I still do not have lupus, almost lupus but not lupus and I am ok with that. There are so many other things that may be causing some of this though. How is your thyroid? Is your tsh down around 1.00 is your t3 in the upper 2/3 of the range and your t4 the same. A lot of my rash and my ANA count went to normal when I got my thyroid problems treated and it helped with the fatigue. No it didn't take it away but it helped and that was worth something. What actually made the most difference to me was getting on the t3 drug cytomel.

Glojer

 
Old 05-04-2008, 07:22 AM   #10
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Re: Does anyone else have a mysterious rash with a flare?

Glojer: Forgive me if this is a stupid question, but is the thyroid test part of the normal blood work done by a PCP or the rheumy? Supposedly I've been tested "thoroughly" and the only thing that has come back is the positive ANA at 1:320. As I explained to the PCP and the rheumy, these rashes are directly correlated to my having "flares". I've never had a rash and not felt horrible with the joint pain, fatigue, etc. Yet, both physicians dismiss the rash with an "I don't know" and it's FM - deal with it. It's time to find a new doctor. I guess I'm going to find a dermatologist who maybe can either scrape it or biopsy it or do something to figure out if it IS something different.

TIFF-CHER: Not to discourage you from your doctor's recommendation of the hysterectomy, since every patient is different, but I had a total hysterectomy in April of 2007 - due to fibroid tumours and severe endometrioses. However, since the hysterectomy, I have felt worse in every other aspect with horrible increasing flares. So, I wonder how the hysterectomy could help you feel better unless it's strictly from a gynecological standpoint?

 
Old 05-04-2008, 10:51 AM   #11
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Re: Does anyone else have a mysterious rash with a flare?

At the same time my doctor diagnosed fibromyalgia, he also diagnosed eczema (or atopic dermatitis -- meaning no clear cause). After reading and looking back in my symptom calendar, I realize now that my now-full-time fibro flared at the same time that my eczema got really bad.

And in the most recent National Fibromyalgia Assn magazine (FM Aware, I think) there's an article that says that about 50% of people with fibro have skin problems.

Jessie

 
Old 05-04-2008, 01:20 PM   #12
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Re: Does anyone else have a mysterious rash with a flare?

lynn it is not a stupid question. Some docs will do it along with what they refer to as a basic or complete metabolic panel but they have to mark the thyroid or tsh box to have it done. We use two basic labs here Quest and Labcorp. If the docs office doesn't draw the blood themselves and send it off they give you a lab sheet. I get them because I go for my thyroid blood test at my convenience and then the doc calls with results. I don't need to see her all the time for thyroid.

So unless your doc is specifically looking for thyroid abnormalities I don't think they will usually have that test run. Since you had the ANA done your doc may have ask for several specific tests. This is the problems though. If your test results came back at 4.9 you would be within the lab range of 0.4 -5.50. Nothing would have flagged on the results page and your doc even if he did read each number would have said you are within range and let it go at that. Most PCP are not trained to deal with thyroid if it is not way out of the range. However the college of endocrinologists have determined that 3.0 should be the top part of the range for tsh and anything over that is too high. You should have your free t4 as well as free t3 run along with tsh. The tsh is not enough to tell you if something is wrong. I used the 4.9 as an example because that is what happen to me, so I went to an endocrinologist because I don't need referrals to see specialist for my insurance. The endos office just needed me to tell them my doc thought I needed to see one. Which I told them yes and nobody knew the difference. I was diagnosed with Hashmoitas disease which is thyroid problems. The endo put me on synthroid and increased it regularly until I was at 112mcg. and feeling better. I still however complained about the fatigue which she put off as my other auto immune problems because I was holding in a good range (there is that good range thing again). So I talked to my new PCP who is an osteopath and willing to work with her patients and she agreed to treat my thyroid and try cytomel the t3 drug, which the endo had refused to do. I took my lab tests in to her and showed her where my tsh stayed normal but slowly increased and my t3 kept dropping until it was almost at the bottom ...of the range.....they love that expression. I went on t3 along with synthroid and eventually just took the t3 (cytomel) and stopped the synthroid and did much better. It helps so much with the fatigue, last summer I had no sun problems at all. My ANA count went to normal after being on synthroid for a while and it has not gone up since.

Now on the other hand, I still have some face rash stuff going on and I still have joint pain and fibro and inflammation and I do get fatigued. The difference however is I am now able to treat the other symptoms and health issues because my thyroid problems are under control. Believe me it is paramount to get the thyroid under control to be able to deal with other health issues. Your thyroid causes so many problems they all get mixed together and nothing ever gets taken care of. Most people think that thyroid is only to help you lose weight. Never.....Never mention any weight problems when talking to a doc about thyroid problems. The first thing is fatigue, the overwhelming fatigue, the lack of energy, then wanting to fall asleep all the time, never feel like you get enough sleep. If you could you would go from the bed to the couch...that kind of thing. Actually I did that on my days off....really that bad! Don't forget the lack of concentration....always feeling foggy. If you have any family members with thyroid problems, especially your mother. Add the weakness and joint pain and if you get those feverish feelings, kind of like a hot flash. Then at the very bottom of the list quickly mention any weight issue you may have, trouble loseing weight or excessive weight gain and then throw in another symptom you may have like wrist pain or shoulder or neck pain. Don't ever lead off with weight issues or end with them or you have lost any doc about thyroid issues.

Now let me see if I can wrap this novel up for you. You will probably have to ask for a thyroid panel to be done but insist on it and insist they do a complete panel if you go to your pcp. If you see an endo they will do it automatically. Then...this is the IMPORTANT part.....ALWAYS get a copy of the blood test....ALWAYS get a copy to keep for your records and to see for yourself what your numbers are. If your tsh is right around 1.0 or 2.0 and your free t's are in the middle or upper 70% of the range then you are doing good. You may want to have this thyroid work done like every six months even if it is normal for a couple of times to see if it stays normal. One thing I always do is get my blood test done at around the same time in the morning so that I will have the same variables and I of course don't take my thyroid meds but you won't have that for the first test. Doctors will tell you that isn't necessary.

I hope you aren't sorry you ask that question. I just know how awful it is to feel so bad with thyroid problems and not be able to get help and not know what to do. My best friend who had her thyroid removed shortly after high school graduation had to learn all this the hard way and when I was having problems she clued me in on what to do and what not to do to communicate with the docs. I feel I have to pass all this info along to others...kind of play it forward. I know how frustrating it is to have a doc say your labs look ok I don't have any magic pill for you, I wish I did. Then just walk out of the room with no help at all. Good Luck let me know how things go if you get the test done.

Glojer

 
Old 05-04-2008, 01:23 PM   #13
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Re: Does anyone else have a mysterious rash with a flare?

Jessie that is very interesting info, thanks for sharing it with us. Welcome to the board, always nice to have another source of information.

Glojer

 
Old 05-04-2008, 02:18 PM   #14
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Re: Does anyone else have a mysterious rash with a flare?

Quote:
Originally Posted by Glojer View Post
Jessie that is very interesting info, thanks for sharing it with us. Welcome to the board, always nice to have another source of information.

Glojer
Thanks, Glojer (or do you prefer Glo?)!

I believe that knowledge is power, so the more knowledge we can share with others, especially about something like FMS and its assorted related maladies (e.g., which came first, my hyporthyroidism or my fibro? sort of hard to tell), the better.

Jessie

 
Old 05-05-2008, 09:04 AM   #15
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Re: Does anyone else have a mysterious rash with a flare?

Jessie, you can call me Glo if you like. It doesn't matter to me. As you can see we often shorten the username when posting and I don't think anyone has ever minded. It just makes it quicker and less typing for our aching digits.

I agree whole heartedly with you on the knowledge is power.....that's why we like this board, so many wonderful people with info to share. It's great!

Glojer

 
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