paulamiddleton
@paulamiddleton
@paulamiddleton
Posts: 17
Joined: Oct 10, 2016
troark
@tyroark
@tyroark
Posts: 7
Joined: Jul 18, 2017
@tyroark Hi Paula, I was diagnosed with Tumid Lupus in April of 2016, two days before my 20th birthday. I have symptoms that fall outside of the norm as well. I have also been diagnosed with Fibromyalgia, degenerative arthritis (although it is looking more and more like Rheumatoid Arthritis), IBS, and Dishydrotic eczema. I am highly uv sensitive, had plaques-but they change form, shape and type everytime I flare (mimicking other skins disorders), as well as the butterfly rash, pleurisy, temperature sensitivity, neuropathy, swelling joints (shoulders, wrists, fingers, hips, and knees), muscular pain and spasms, migraines, fatigue, etc. Up until I started sesing my current rheumy, I was told it was impossible to have symtoms that were not skin-related. I did not have all of these symptoms at first, but they have been getting worse. My mother has tumid lupus with positive ANA. What are your symptoms? I hope you’re doing well.
Paula, with insomnia keepimg me up, I started doing some research for you amd found an abstract from a study done by nih on progesterone effectively treating hot flashes without withdrawals. It may be of interest to you, so here’s the link: https://www.ncbi.nlm.nih.gov/pubmed/22849758 Also, I read an article a few months back about lyrica/neurontin and how detrimental they are to the formation of brain synapses.
Parus
@parus
@parus
Posts: 2239
Joined: Jul 14, 2017
troark
@tyroark
@tyroark
Posts: 7
Joined: Jul 18, 2017
@parus There are times I see what others recommend and hope no one else will try such suggestions. Okay to suggest…mentioning a specific company I am not in agreement with so try a PM…a suggestion.
Thank you for the suggestion, I see your point. However, I posted the link because only one company makes them, and I was replying to a question.
paulamiddleton
@paulamiddleton
@paulamiddleton
Posts: 17
Joined: Oct 10, 2016
@cammieb95 Hi , I was recently (last week) diagnosed with Tumid Lupus. Back in March I was diagnosed with discord lupus. I Have extremely scarred ears from the discord lupus. My ears have been damaged for the last 5 years and the doctors kept telling me I just had adult eczema. On my 21st birthday I got the proper diagnoses of discord lupus from a lupus dermatologist specialist in the Houston area. My original diagnoses came from when I went in for my well woman exam, I had two masses in my breast that have been there since I was 17, I got a mammogram and the doctor that came in to tell me my results was extremely shocked, I had identical masses in my breast that weren’t cancer, she explained how rare and unusual that was and suggested I might have Lupus mastitis, which is an EXTREMELY rare form of Lupus where there have only been about 23 cases in the US. I started going to my dermatologist and she started me on topicort cream and steroid shots in my face. I don’t have the common symptoms of SLE or discord Lupus or even Tumid Lupus. Only my ears are covered in lessons , I have a small lesson on my face from doing a UV light treatment, I have one lesson on my scalp ,but I still have a head full of hair, it wasn’t until recently that I started having large masses form in my arm , so I began getting steroid shots in my arm now. I am on plaquneil but I do not take it like I should, but the side effects scare me and I rather take a natural approach to Lupus. I have noticed how hot I have been lately and after reading these posts, it makes me think my body temperature is related to my Lupus. I also don’t have any positive ANA or show signs of SLE but my rheumatologist seems to believe I do from other blood work. I also an very anemic and I take Iron pills, vitamin D, thyme , cod oil and garlic pills.
Thank you for the link. I am going to try some of these supplements.
thestruggleisreal
@thestruggleisreal
@thestruggleisreal
Posts: 2
Joined: Sep 10, 2017
I was diagnosed with Tumid Lupus in 2004. It is rare, and dermatologists and rheumatologists don’t always have answers. In addition, my skin is fair, and after many years of being of sun worship as a young girl, I have tons of skin cancer and basal cell scars. No sun for me. I was diagnosed with fibromyalgia in 2010. Joint and muscle pain, fatigue, etc. BUT, I look fine on the outside. Sometimes I think my husband and children forget that I am not feeling well on the inside. On the days I feel OK, I push myself to get as much done as possible, and then for the next couple of days, I pay the price. Same old story. I am forever thankful though that this lupus is not systemic.Just thought I’d share my 2 cents.
Liked by Kanaaz Pereira, Connect Moderator
Kanaaz Pereira, Connect Moderator
@kanaazpereira
@kanaazpereira
Posts: 2330
Joined: Oct 09, 2016
Hello @thestruggleisreal,
Welcome to Connect; we’re glad to have you join us, and thank you for sharing. So often, symptoms of chronic conditions such as lupus and fibromyalgia are invisible to the naked eye, but I can imagine how awful you must feel – it’s like having an invisible illness!
I encourage you to read through past posts in this discussion – they are incredibly informative, and I’m certain @paulamiddleton @mnkennedy @sandpiper09 @tyroark and others will join in with their insights. I’d also like to introduce you to some other members who have experience with different forms of lupus. Please meet @WendyAnne @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888
@thestruggleisreal, how do you cope with your symptoms? Besides medication, do you have any suggestions or tips for getting relief, especially from heat?
Liked by John, Volunteer Mentor
mnkennedy
@mnkennedy
@mnkennedy
Posts: 8
Joined: Jul 14, 2017
My friends and family rarely remember how hard day to day life is for me. It can be very isolating and very hard not to push everything inside yourself. I try very hard to have patience and just remind them I cannot do that or I need to rest. My parents are getting much better. I have stopped talking to my friends about it. I also am so happy everyday that mine is not systemic as well. I cannot imagine going through any more.
REPLY
thestruggleisreal
@thestruggleisreal
@thestruggleisreal
Posts: 2
Joined: Sep 10, 2017
@kanaazpereira Hello @thestruggleisreal,
Welcome to Connect; we’re glad to have you join us, and thank you for sharing. So often, symptoms of chronic conditions such as lupus and fibromyalgia are invisible to the naked eye, but I can imagine how awful you must feel – it’s like having an invisible illness!
I encourage you to read through past posts in this discussion – they are incredibly informative, and I’m certain @paulamiddleton @mnkennedy @sandpiper09 @tyroark and others will join in with their insights. I’d also like to introduce you to some other members who have experience with different forms of lupus. Please meet @WendyAnne @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888
@thestruggleisreal, how do you cope with your symptoms? Besides medication, do you have any suggestions or tips for getting relief, especially from heat?
I am on medication – Plaquenil, and every 6 months I have to have a special eye exam. I take some other meds so that I can be comfortable when trying to sleep. As far as heat, that is a tough one. Just a couple of days ago, I was seated outside in the shade, but the sun did come through the trees a couple of times, and that is all it took for me to be bedridden and in pain the following day. I try to not get overheated because that makes me have a bad reaction.
Liked by Kanaaz Pereira, Connect Moderator
paulamiddleton
@paulamiddleton
@paulamiddleton
Posts: 17
Joined: Oct 10, 2016
@kanaazpereira Hello @thestruggleisreal,
Welcome to Connect; we’re glad to have you join us, and thank you for sharing. So often, symptoms of chronic conditions such as lupus and fibromyalgia are invisible to the naked eye, but I can imagine how awful you must feel – it’s like having an invisible illness!
I encourage you to read through past posts in this discussion – they are incredibly informative, and I’m certain @paulamiddleton @mnkennedy @sandpiper09 @tyroark and others will join in with their insights. I’d also like to introduce you to some other members who have experience with different forms of lupus. Please meet @WendyAnne @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888
@thestruggleisreal, how do you cope with your symptoms? Besides medication, do you have any suggestions or tips for getting relief, especially from heat?
I also take Plaquenil and at night I sleep on “Chillow Pillows” which I love and keeps me cool at night. I do have a curiosity questions.., you spoke of getting just a touch of sun and it making you bedridden. Is it just pain or a physical sickness. The reason I ask is I can be exposed to the sun and while it will make me hot in a different way than others and I will probably get red splotches on my skin, these will disappear when I get out of the sun but I do not get sick so I am trying to understand your symptoms.. Thanks
paulamiddleton
@paulamiddleton
@paulamiddleton
Posts: 17
Joined: Oct 10, 2016
@kanaazpereira Hello @thestruggleisreal,
Welcome to Connect; we’re glad to have you join us, and thank you for sharing. So often, symptoms of chronic conditions such as lupus and fibromyalgia are invisible to the naked eye, but I can imagine how awful you must feel – it’s like having an invisible illness!
I encourage you to read through past posts in this discussion – they are incredibly informative, and I’m certain @paulamiddleton @mnkennedy @sandpiper09 @tyroark and others will join in with their insights. I’d also like to introduce you to some other members who have experience with different forms of lupus. Please meet @WendyAnne @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888
@thestruggleisreal, how do you cope with your symptoms? Besides medication, do you have any suggestions or tips for getting relief, especially from heat?
By the way I am also very sensitive to fluorescent lighting and have to work with my office light off and use a small lamp instead
Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication… Please share your knowledge of Tumid Lupus.
REPLY
proudindian
@proudindian
@proudindian
Posts: 14
Joined: May 06, 2018
@lakelife1 Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication… Please share your knowledge of Tumid Lupus.
I have lupus, but haven't heard of Tumid lupus. I was on plaquenil for years and was taken off gradually, along with cell cept. They both affect the liver and or kidneys. I do limit my time in the sun, but it is very doable. Will have to do research on your type of the illness. Wishing you well!
REPLY
paulamiddleton
@paulamiddleton
@paulamiddleton
Posts: 17
Joined: Oct 10, 2016
@lakelife1 Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication… Please share your knowledge of Tumid Lupus.
I too have Tumid Lupus and what I’ve found out is that it’s so rare that most Dr’s don’t know enough… I take Plaquenil which helps and I also take Lyrica which was an experiment but it does help. Unfortunately I have symptoms that fall outside the “box” and so far I have found no answers for them and neither has my Dr. I am extremely sensitive to floresent lighting so I work with my office light off and use a small lamp.
If you find out any interesting information about Tumid Lupus please share as I am always looking for new information.. THANKS
John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 4652
Joined: Mar 22, 2016
@paulamiddleton and others — I don't have Tumid Lupus but I ran across a link that may provide some helpful information on Tumid Lupus.
Lupus Tumid | List of High Impact Articles | PPts | Journals | Videos
— https://www.omicsonline.org/scholarly/lupus-tumid-journals-articles-ppts-list.php
John
Liked by Kanaaz Pereira, Connect Moderator
@tyroark
In reply to @cammieb95
I get them from Swanson online. For more info here is the link. https://www.swansonvitamins.com/swanson-condition-specific-formulas-fibro-essentials-90-veg-caps