Bringing information & encouragement to fight RA
I started having the same thing in the past couple of months. I showed my Rhuematologist, but she didn’t say anything about it, just that I needed to get a Dermatologist to see on a regular basis.
So I went to the Dermatologist. Most of my odd skin symptoms that look like a mild vasculitis, she’d just say they were probably this or that, nothing serious. Then, I told her about my strange rash that looked like someone traced all of my capillaries. She immediately said that was most likely related to the RA, and ordered 4 blood tests that I’d never heard of, and that would take at least 2 weeks to do at the lab.
Now, I’m just waiting. It’s funny that none of them would say what they thought it was. It may be because I’ve only been officially diagnosed since Dec-12, and they didn’t want to scare me. I don’t like being left in the dark so I Googled it, and found the accurate name.
I don’t like being in the dark either Elysha – it’s funny when you think about it because we have to look at the symptom every day (or feel it) so we do know about it anyway… And we deserve the name to go with it.
I have a rash on my legs also. I see the doctor at the end of June and I wonder if it is ok to wait that long to show him. As for pain….I am always in pain…and in Oregon, they now can only dispense 100 pills which I take sometimes 4 times a day. So 16 days later there I am again asking for a refill. Don’t they understand our pain? I have had a rash on my back for years and treat it constantly with salt baths, and the lotion called Borage. It works and it is over the counter. Problem, when the rash heals, it leaves brown spots and little red dots all over my legs. Then shortly it will start all over again.
Congrats on this milestone symptom interpretation! Talk about an AHA! moment! Affirmations such as these can renew faith in our medical caregivers (aside from the fact that you had already researched and figured this out for yourself…haha!). It’s just a huge accomplishment to get it documented in your chart and, for that, you must be appreciative. Best wishes for finding yet another Rheum…possibly Dr. Perfect?!? Hugs to you!
Glad you got this diagnosed, sorry it took a year and a half! Hoping you find a better rheumtologist. After working full time, I’ve decided to stay home with my kids. The job stress is causing me to have RA flares and more depression than I can handle and I don’t want to go on meds yet. The silver lining is going on my husband’s insurance means I have to change theumatologists. I am hopeful that the new practice though further away will provide better care and are more on the cutting edge of research and ways to help RA patients. I look forward to the change. Good luck Kelly and hope your symptoms are better managed. Amazing how your body gives signals that things aren’t quite right in there, we just need docs to listen!
GRR!!! I can’t tell you how many times I have been in to the doctor…whether GP, Derm or Rheum with my legs all blotchy like that…with me in SHORTS and mentioning it to them…and they tell me something like “well, it’s a little cold in this office, it’s probably just your circulation” or something similar. Sad, sad, sad that I end up doing a lot of my diagnosing and then going to the doc and saying…ok, here…is this what I have? What are we going to do about it??
Thank you for this post. I didn’t know what it was, and now have a name for it.
A tremendous example for the healthcare world. Imagine a health professional kneeling beside a patient with a medical book. So glad you got confirmation on this diagnosis.
About a year after diagnosis I started having skin problems – my hands, arms and legs were so very dry and my face actually started peeling. I had been searching for answers and thought it was likely related to the RA or meds. I went to one of the “best” derms in the city. As I sat there across from syringes filled with something he finally entered, asked why I was there and then looked at my face. He smiled, handed me a mirror and said I don’t see anything, can you show me. My face was peeling all over and it was very visible. He repeated several times – I don’t see what you’re talking about. He finally pulled out the prescription pad and wrote five – an antibiotic along with non-prescription creams and cleansers. One thing he did confirm – there was positively no way it was related to the RA. (Even though he did not see “it” or know what “it” was, “it” was not related.)
I left feeling more frustrated than ever. Never found out what it was. It lasted months and finally cleared, but it does come back occasionally. I guess if I had wanted my wrinkles filled he would have been more quick to respond.
Oh for us to rewrite the way patients are cared for.
omg ! I have the same looking thing on my thigh . i thought it was markings from valley fever but i also have a compromised immune system and RA, i have asked my family doctor as well as my infectious disease doctor and my roamy and they didnt know what it was either, now how do we treat it
rawarrior Kelly I have this too esp on my arms. My RA dr pointed it out to an intern & called it by name. My pat gmother had it also
I have this too, luckily my Rheumy told me what it was right away. I mostly get it when I’m cold so he is not overly concerned. Keeping an eye on it. He called it that name but then he also had another name for it, I’ll ask him next time I go. When I read your posts I feel lucky I have a good Rheumy! Glad you figured this out.
I have this exact rash on my upper arms. It sometimes appears on my thighs but the upper arms are constant. Thank you for posting! I finally know what this is!
I have had severe RD for 17 years now, and I have asked several doctors about the weird rashes I get. Some just seem to appear out of nowhere, and some have stayed for years. The only advice I have received is to use Cortisone cream, which does nothing.
I am stunned. I knew in my heart that it HAD to be related to the RD, but could not get this confirmed. Thank you SO much for this information. I have something concrete to talk to my doctors about now. Thank you so very much.
It’s amazing what can be so simple for one doctor and baffles another. This post has made me realize I really need to find a new rheum myself. I have been seeing the same doctor for 4 years with no real diagnosis. Just, “there’s some rheumatism going on.” I’ve never had any x-rays from him and he’s only ever tried old medications and when they don’t work or I can’t tolerate them, he has no other answers for me. These doctors know we rely on them, why do they have to be so frustrating?
Crap, Kelley, is that what I have on my hands and feet???? I don’t google everything but after reading your post, I thought, wow, a purple lace like rash… that’s like my hands and feet. A mottled appearance that gets worse the longer I’m on my feet. One of the first images I saw looked exactly like my palms and soles of my feet. I have NEVER had a rheumatologist even look at my feet or my palms. Now, where can I find a good rhematologist who won’t just say RA doesn’t do that and you can’t have SI joint or cervical spine RA.. Anyone know a rheumy like that in central TN or north AL???
I have the same rash on my left leg – shin area. Finally realised what this is. It can be quite itchy. My GP saw it last month but was not sure what it is. The frustating part is when I talk to my Rheumatolgist about new problems – I get told that it is not connected to my RA – my back pain, my peridontal disease,my new rash. Lately I was told after a new blood test , that my RA is severe but I am never checked to see if my heart or lungs have been effected. Oh my kidney and liver problems are not from RA either. SO frustrating!!!
I wish I could upload a photo for you ladies with personal expertise. It was encouraging reading a positive experience with a doctor. Glad I found this site again.
Kelly, I am so happy I found this tonight. I recognized the pix right away, and I had this when I was in High School! I never knew what it was, of course because I wasn’t dx’d with RD until I was 43. Growing up I had such aching in the bones in my legs. Literally, the bones themselves ached sooo bad (written off to growing pains)…plus my thighs looked just like this. It definitely got worse when I got cold, and I live in Montana so that was a lot. I still remember the other girls or boys in gym class saying something about how weird my legs were. I just figured it was because my skin is so bleedin’ white LOL!! I am still kinda stunned…huh. The things we learn later in life…thank you Kelly! <3
I’m sure this isn’t the same as what you have, but I was diagnosed with this recently and it reminded me of you.
Yes, it makes sense that you made a connection. That is a rare type of livedo reticularis caused by cold. http://en.m.wikipedia.org/wiki/Cutis_marmorata_telangiectatica_congenita
I have the same thing going on with my foot. It started out very tiny & started after I had some intense foot pain for no reason. X-rays were done & arthritis was seen & the urgent care Dr said she thought I probably had RA, but the weird rashy non-rash was ignored. I saw my family Dr after that & he ran blood tests for lupus & rheumatoid factor. Ruled out lupus, had slightly high rheumatoid factor, but normal CCP. Continued to have joint pain in nearly all my joints by this time, but right side had more pain. My family Dr didn’t know what the discoloration was. Was referred to a rheumatologist. I had a very good day that day with hardly any pain & he said I probably had RA but he seemed hesitant to officially diagnose it. He wants to see me back in a month & he had no idea what the discoloration on my foot was, which now covers the entire top of my foot & some of my ankle. I continue to have daily pain of varying degrees & it gets waaaay worse the more I do. Thanks to your website here, I’m pretty sure the discoloration is from this livedo reticularis. I wish it was easier to diagnose this & RA, because I’m positive I have it & don’t want permanent damage because I wasn’t able to start treatment soon enough. Pain meds don’t even seem to help much. Any thoughts?
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