I am 35 and have been having a lot of strange symptoms for a while. A lot of joint pain, swelling in the morning, fatigue, dizziness, visual changes. THey never could say what it was. I had an MRI of my brain b/c of the vision and went to a specialist. NOTHING! The joint pain, etc they said oh you must have early arthritis. My ANA was positive, twice. My doctor sends me to a neurolgoist because of some bulging at c5/c6 and to check nerve function in my arms/hands since I have so much pain. They keep saying I think you need to see a rheumatologist. It isn't neurological. PT will help your neck. I get passed off again. I have been feeling like a 90 year old woman every morning for 4 years. I am ready to feel better.
My ANA was positive, my thyroid was 4.3 (T3 111, T4 1.07)and my ANA Comprehensive Panel Anti-DNA was 6.
Monday I broke out with what the doctor thinks is a lupus rash on my chest, L side of my face, R arm and L leg. My chest and arm are the worst. He gave me a steroid injection and now has me on Prednisone b/c it is still itching like crazy.
He put me on Mobic for the joint pain.
I will say the Mobic is helpng.
He doesn't really know what is going on. I am waiting to see a specialist. He says he thinks it might be Lupus and/or Fibro. He doesn't think my thyroid is an issue.
I am so confused.
i don't know what is wrong.
Does anyone have any ideas or advice?
How long does it take for the rash to stop itching and go away? Any tips, advice?
Also, can some help me with the anxiety/depression part of all this? I have heard that there can be links with this and Lupus. I have had crazy anxiety and depression symptoms lately (even before the rash and the possible new diagnosis).
I know that is a lot and I appreciate any advice you can offer.
Lupus and fibro carry identical symptoms and you can actually have both in some cases but with your ANA showing positive and when your "ANA Comprehensive Panel Anti-DNA is a count of 6-7 it's usually a sign associated with SLE...you need to see a rheumo with these tests you've got coming in as more bloods will be run and with the skin issues your having that can be any autoimmune disease such as psoriasis etc and you need to be refered to a Dermo for this to be looked at and while it's in a bad way as you've stated take pictures to show the specialist's incase it goes but if you do have Lupus and it sounds like it to me but i'm not a doctor to say yes or no...then regarding the rash it might be a flare your in and they can last up to 2wks or over, more than 6wks then your into a chronic flare.
Your thyroid level shows you have "Hypothyroidism" and you should be on medication for this the same as myself...Thyroxine is the best.
I'm a manic depressive and with people depression can start naturally like any other symptoms but Lupus can also cause this to start in the immune system and it's the worst thing for Lupus in the manner as it thrieves off depression and makes your symptoms feel double what they are.
The link below is about Lupus symptoms in general.
Hang in there, you're in the right place - for encouragement, wisdom and friendship (I'm fairly new here myself but feel at home).
It sounds familiar - all the different symptoms, even having docs not understand or misdirect. I think a rheumatologist sounds like a plan - they are used to dealing with all the different symptoms that can go together with autoimmune diseases.
Many of what you mentioned goes together: rash, thyroid, moods, all that stuff - I have too and so many people here - I use cortisone cream for itch but not on nose - too much can thin the skin.
Just want to tell you to hang around here - check out GROUPS, you might find something there too.
Your right about the cortisone cream as i used to have it...it's a steriod cream but excellent on removing rashes but it's an aging cream to the skin and once you finish using it, you should always have 6mths break to help your skin.
Oh yeah, taking pictures of rash - excellent idea! Anything visual, take pix cuz it helps docs.
Didn't know that about the cortisone cream, Terri, I'm glad my face doesn't itch but my lately, getting itchy on feet/hands - legs/arms. Weird. If my body starts looking as old as I feel, I'll know why.
Keep us updated, Saltnsand, we care. (right now, you are helping me by getting my mind off me)
I took it for ages after the breaks and it got where my DLE reacted against it in the end...when i applied it the heat to my skin was bad...i felt like i'd been baked in the oven.lol
Thank you for the advice. I really appreciate it. It hurts to go out in the sun right now. My skin feels like it is on fire.
Did any of you every have trouble with swallowing? I feel like I have something stuck in my throat. I keep drinking to try and push it down, but it just stays there. Usually in the morning it feels better, until I eat. Then it feels like lodged food and/or a knife in my throat.
I've had that from time to time and the more I think about it...the worse it gets. My doctor suggested perhaps it is some sinus or allergy issues. I have taken a small amt of liquid benedryl and I drink a large glass of ice water. It seems to help shrink the throat tissue. Thankfully it hasn't happened in a while.
My heart goes out to you. I can totally sympathize with the feeling like you're 90 years old. I feel like that most days. I'm no dr., but you're symptoms sure sound like lupus. I don't have a rash, but in case it should go away, take a picture of it so you have proof when you see a rhuematologist. Have you spoken with your general dr. about your depression/anxiety symptoms? These are classic with lupus and fibro. (I have both). Please work on getting those 2 symptoms treated ASAP. Speak to your dr. about anti-depressants if you haven't already. I really hope you start getting some answers.
I have tumid lupus which is a rare form of skin lupus. Your symptoms sound so familiar to me. My suggestion is to have the rash biopsied in order to determine what type of lupus rash it is. The only lupus rash that itches is tumid lupus. I had three positive biopsies and this is how I was finally diagnosied. It has take me many years of suffering to be diagonsied and if it was not for the rash I don’t beieleve the doctors would have ever put it together. I use to tell my husband upon waking in the morning “that a Mack truck was in our bedroom, it must have run over me and then backed up and run me over again!” LOL! Does this sound familiar?
I have some pictures of my rash on my page if you want to go and check them out to see if it looks like the rash you have. I take a medrol does pack when my rash is bad. I also use rx tropical steroid cream. One for the body is called clobetasol propionate ups 0.05%. The on for my face is hydrocortisone cream usp 2.5%.
Also most lupus rashes are only on the limps. If your rash is on the trunk of your body then it really needs to be biopsied by a demrotologist.
I really do advice you to keep out the sun because with skin issues you have going on right now...the sun can hurt we bad and "Ann's" given you some excellent Advice and issues about it, as she studies in that field of work to do with Lupus
"Deenie" as Tumid Lupus which is rare where i have DLE..but still push forward for what she mentioned a biopsy to make sure what it is.
Also "traci" as given execellent advice besides Links on "GERD"
Also secondary "Sjogren's syndrome" can cause this issues as i suffer with the lodging of food and to read more on it...we do have a sjogren's group on the main page you can join....with an excellent link on the syndrome.
Love Terri xxx
saltnsand said:
Thank you for the advice. I really appreciate it. It hurts to go out in the sun right now. My skin feels like it is on fire.
Did any of you every have trouble with swallowing? I feel like I have something stuck in my throat. I keep drinking to try and push it down, but it just stays there. Usually in the morning it feels better, until I eat. Then it feels like lodged food and/or a knife in my throat.
Hey I know you are scared and a little angry that this is happening who wouldnt be. I have found the dose of the prednisone determines how long the rash takes to clear up the higher the dose the faster the rash is under control. I would suggest a couple of things if your ana was positive see a rheumatologist they should order a full blood panel. start a medical history diary. symptoms, treatments and test results take it to all your doctors ( that way the doctors have a better picture of your medical state) and you are right for many people stress is a flare trigger so keeping it under control should help. If you have any questions or want to talk I am here . God Bless. Hugs
That is correct I am very very /extremely sensitive to the sun! I explain it as I am allergic to the sun! I have a chronic rash on my chest and the doctor has told me that it will probably never go away. When my rash is acute I take a medrol dose pack. It does help but sometimes it can take weeks for the rash to calm down. Tumid lupus rash is the only one that itches and it will not leave a scar.
The best way to know what type of skin lupus it is would to have it biopsied.
Best of luck…Deenie
/>
Ann A. said:
Hey Deenie,
Many of the articles that I have been reading about photosensitivity and lupus describe people tumid lupusas VERY/EXTREMELYphotosensitive.
Dewing3569 said:
Saltnsand
I have tumid lupus which is a rare form of skin lupus. Your symptoms sound so familiar to me. My suggestion is to have the rash biopsied in order to determine what type of lupus rash it is. The only lupus rash that itches is tumid lupus. I had three positive biopsies and this is how I was finally diagnosied. It has take me many years of suffering to be diagonsied and if it was not for the rash I don’t beieleve the doctors would have ever put it together. I use to tell my husband upon waking in the morning “that a Mack truck was in our bedroom, it must have run over me and then backed up and run me over again!” LOL! Does this sound familiar?
This is how I get. Just the sun hitting my skin hurts. I feels like I have the worse sun burn ever and when the sun hits my skin it just set me on fire. Of course this only happens when the rash is a acute!
Deenie
saltnsand said:
Thank you for the advice. I really appreciate it. It hurts to go out in the sun right now. My skin feels like it is on fire.
Did any of you every have trouble with swallowing? I feel like I have something stuck in my throat. I keep drinking to try and push it down, but it just stays there. Usually in the morning it feels better, until I eat. Then it feels like lodged food and/or a knife in my throat.
That's how my skin is when the sun hits me, i soon start to burn but it makes me feel like i've been roasting in an oven for hours and before i came off the steriod creams through counter reacting in the end...my god i would have gone up if a match would have been lit as they really burnt me.
Steroids are a woundful thing when you really need them, but the side effects are terrible. Well if it comes and goes then you can’t have it biopsied or is it there long enough to do so?
That is too funny! The first rash I had was one spot on the upper left arm and I figured it was ring worm. That was in 2007. My dermatologist said there were too many skin issues that appeared to look like ringworm, mine wasn’t scaly so she did the biopsy. The first test revealed consistent with SLE. The second test came back negative. However after two more positive biopsied of other rashes I called the first lab doctor and demand that he send the first biopsy to the second lab doctor. Atfer him putting up a fight and six week went by, he finally did what I requested. The second lab doctor confirmed the ringworm looking rash to be tumid lupus. However my rash does not come and go. It comes and stays a while.
I think that is a good thing you are doing schedule things around the sun. That is what I try to do as well. But sometimes it just doesn’t workout!
Thank you all so much! You are so much help. I can't find a rheumatologist that will take me so I still don't have a lot of answers.
I have another question. My rash went away after a steroid shot and round of prednisone. Can you tell when you are about to have a breakout again? About how long do you stay rah free? The Mobic is really helping my joint pain. I feel much better. The constant lethargy is killing me and i feel like a grouch most of the time. I also have been experiencing major mood swings. Is this normal?
I cannot thank you all enough for you help. hugs!!