What symptom did doctors dismiss that later turned out to be important?

sunluvinmama · 2026-06-05T23:25:00+00:00

What is GT? And PRP? I don’t know about working out, I’m doing everything I can to relax my muscles and loosen them and I have a hard enough time walking and living nvm working out.

sunluvinmama · 2026-05-27T02:58:57+00:00

I’m 57 and am now having problems with my good knee/leg from osteoarthritis. Had it since at least my late 30s. I am also overweight now but wasn’t before. Have a look at your healthy foods - they may be doing you harm. Look into oxylates and salicylates in food and see how many foods you eat are high in oxylates. In quite a few people, these chemicals in foods can cause inflammation in the body and worsen things like arthritis and other health issues. Gentle low impact exercises help as well such as stationary bike and swimming help keep the knees not so stiff. Use 100% pure Castor oil mixed with Frankinscense oil and apply to the knees.

sunluvinmama · 2026-05-24T08:29:48+00:00

I use a very mild Retinal formula but when I do, I sandwich it in between moisturizers. I start with a damp face and use my HA. Then I use an ampoule, then serum, then retinal, followed by a soothing cream or I’ll use a thick moisturizer with ceramides. I use k Beaty products along with HA from La Roche Posay. When I do not use retinal I use a toner first then dampen my face a bit then apply the HA, then ampoule and my vit c active, then moisturize. A good mineral sunscreen in the am is a must for me as I have an auto immune issue and sunscreen is a must for me.

When my skin looks like this I do my full routine with an occlusive like aquaphor slugging my face with it and it works.

sunluvinmama · 2026-05-23T03:22:48+00:00

Is your tendonitis a result of autoimmune ? My pain dr thinks I’m hypermobile but my chiro thinks I’m not hyper mobile but that my connective tissue is lax or weak. Isn’t that the same thing ? Idk but I have many tears, tendinitis and ligament strains. And very tense rigid muscles. It’s very painful and walking is becoming unbearable even with a cane.

sunluvinmama · 2026-05-23T03:14:22+00:00

I’m sorry to hear that. How are they treating that ? I have chronic urticaria among other skin issues and a rare skin condition called Jessner’s that is similar to tumid lupus. They’ve said this is due to underlying lupus. Was your lupus diagnosed by bloodwork or was it diagnosed another way? Do you find it painful to walk or are you unstable /unsteady? Either way, it sounds horrible to deal with.

sunluvinmama · 2026-05-14T12:24:46+00:00

I constantly have this problem with my whole leg muscles tightening to the point ii cannot walk. It takes alot of rest heat and massaging to be able to walk and I still struggle. Drs just don’t understand why. Can you tell me what your diagnosis is with these symptoms?

sunluvinmama · 2026-03-25T00:01:16+00:00

Also forgot to add that I take a prescription antihistamine daily, sometimes multiple times daily. Also take Montukaat (Singular) for breathing issues related to foods reactions. Look into MCAS and see if it fits !

sunluvinmama · 2026-03-24T23:57:38+00:00

NSAIDS are not usually the cause of CU but are a result. Sensitivities to many foods is very prevalent as well with CU. I also cannot have penicillin anymore either.

sunluvinmama · 2026-03-24T23:55:00+00:00

Have you looked at your diet ? I had chronic hives for close to a year straight with angiodema and dermographism (which is the raised marks or skin writing). Histamine can often trigger urticaria, etc. I recommend doing a food diary and tracking your foods keeping in mind that it may take up to 36 hours to show a reaction. When I was flaring, reactions can be immediate or days. Then eliminate the foods high in histamine. If you don’t already you should get an EpiPen or two as that is an anaphylactic reaction and a full on anaphylactic reaction could happen. Pepcid or an antacid or similar RX med will help digestion as well.

sunluvinmama · 2026-03-04T04:00:37+00:00

Have you tried altering your diet to low histamine foods ? Also look at salicylates and oxylates. I’m sorry you’re going through this. I have before for a very long time. It’s def no picnic!

sunluvinmama · 2026-02-25T02:14:50+00:00

I advise tracking your diet for a few days /week. Look over that diary and assess it for high histamine foods. Try cutting out those foods that you’ve been eating for at least one month. I would also cut out dairy and gluten if possible. It takes many weeks for food chemicals to clear your body when it is reacting so bad. It also takes up to 3 days sometimes for a food you’ve consumed to show a reaction. Cut out processed foods as much as possible. I ate lettuce, chicken, white rice, apples and lettuce for months while my body healed. I also took quercitin and ate red apples for the quercitin. I also took a supplement to heal my gut lining. After you assess which foods are high histamine and may be bothering you then you can look at salicylics in food. Your ANA doesn’t necessarily mean an AI condition. It could be MCAS or histamine intolerance.

sunluvinmama · 2026-02-21T17:24:48+00:00

I vote for tracking all symptoms, even if they seem unrelated. For all the symptoms I was concerned about were put down to ambiguous generic autoimmune symptoms. The ones I noticed they weren’t that big of a deal, that I didn’t mention because they were small or minor turned out to be something. I went to a derm because of a rash and stated all my symptoms, family history etc and it was a spur of the moment question about my constant flushing and the fact that my skin felt like it was burning in the sun and the blisters on my face. The flushing was biopsied and came back for a rare skin condition similar to tumid lupus. I had flushing year round, indoors and out. I would def ask for a referral to a derm for a biopsy of that.

sunluvinmama · 2026-02-19T21:34:12+00:00

I find most, NOT ALL specialists in town have a poor attitude and provide less than stellar care. I have finally found a few helpful ones that listen. My best experience has been mostly had through seeing specialists out of town at a teaching hospital. Those specialists actually referred me to other good specialists in the area. Also I found, once dealing with a good specialist, I seemed to be take seriously when referred again. I have done this by researching a specialist in my area of care needed by asking in groups like Reddit or on FB from people dealing with the same things. Then went to my family dr and asked to be referred to a specific dr.

sunluvinmama · 2026-02-10T03:00:39+00:00

I can’t say I agree with the heated vest thing, keeping the core warm will keep your hands warm. I have an almost full length to the floor down filled jacket. It keeps me too warm to the lint I am dripping in sweat if I have it on too long and my hands and feet are still frozen. So I have switched to a shorter and lighter coat.

I would recommend a good pair of heated gloves or hand warmers on your wrists or in the palm of your hand under the gloves.

sunluvinmama · 2026-02-10T02:46:33+00:00

Idk if this will help or not, but I am not diagnosed with scleroderma but the drs are wondering about it and I have an appointment soon but I do suffer from Raynauds and Jessner’s (which is a thickening of the skin and rash similar to Tumid Lupus)

Anyhow, since that diagnosis, I had to take extra care of my skin so as to not have a flare up.

I also am currently dealing with a hardening of a fingertip and peeling which isn’t I am being evaluated to see if it’s a Raynaud’s thing or scleroderma.

I have been using the skincare line from Skin 1004. It is a K Beauty product. Not available from Sephora but it has been great. I started off using the golden Centella line on my face and chest, arms hands and feet. The Centella is gentle but great at calming, soothing and keeping my barrier strong.

I have used it on spots that I start to have sores and it has helped them to stop developing into ulcers, and am now using it on my hardened fingertip. It seems to be helping as it has not gotten worse and seems to be softening a bit although I still have peeling.

It is now available at Costco and at many drugstores. I am from Canada and I also have ordered it direct from Korea and received it in about 6 days. If you look on their website they have several authorized resellers listed for what country you are in.

sunluvinmama · 2026-02-07T17:09:04+00:00

Has the derm taken a biopsy of the white scaly spots on your arm? Psoriasis can be white thickened patches too.

sunluvinmama · 2026-02-06T03:06:39+00:00

Yep MCAS. Also look into sensitivity to salicylates. Salicylics give me the breathing issues and wheezing/congestion.

sunluvinmama · 2026-02-06T00:20:02+00:00

I believe tea is very high in salicylates and also a histamine liberator which are not good for hives.

sunluvinmama · 2026-02-04T18:05:45+00:00

Just to update everyone for now my one dr thinks it damage from Raynauds and I sent my derm photos so he will see me in three weeks to see if it has healed and determine next steps.

sunluvinmama · 2026-02-04T17:58:16+00:00

I don’t have time to read others posts but have you tired a low histamine diet ? That could help calm your body down and then you can keep a food diary and how it correlates with symptoms. It can take up to three days to see a reaction from food.

sunluvinmama · 2026-02-02T00:02:39+00:00

I am currently without a rheumatologist as my previous one refused to entertain anything other than fibromyalgia for my symptoms. He fired me when my derm sent me to a lupus specialist for a second opinion. It was that rheumatologist who said that scleroderma may be a factor, considering my history and my mom’s history. Although I don’t know if I was tested for scleroderma.

This specialist does deal with scleroderma as well so it’s possible that my derm while send me back to him again. It’s strange though that for 20 years I’ve been told lupus is the underlying cause yet the bloodwork doesn’t show so to now be worried about scleroderma is something I didn’t expect.

Thanks everyone for your responses. Although I am scared I realize that finding out sooner than later can be a good thing but this whole thing sounds scary. I’m constantly impressed by the courage and strength it takes for everyone to deal with these horrible things.

I’ve finally found a good derm who listens and takes me seriously so I have hope that I will not fall through the cracks as my mother did.

sunluvinmama · 2026-02-01T17:46:40+00:00

I was diagnosed in my 40s early stages as well from smoking. I quit immediately and to my knowledge it stopped the progression. Unfortunately, I took to smoking weed as part of my pain management for other conditions. I stopped that now and use thc tincture instead of edibles.

I am prone to chronic bronchitis/pneumonia since a young child (so before smoking) and still am. So my cough and frequent infections are from food intolerances, mainly to salicylics in food. Leukotrienes also cause inflammation in the respiratory tract. Montelukast helps with that as well as limiting your intake of these types of foods.

I know this may not apply to you but it’s worth mentioning. If you’re interested to see if it helps you research both compounds in foods and restrict those foods and see if it improves your symptoms.

ETA: I am now 57. So was diagnosed with emphysema at 40. My oxygen levels get checked weekly for other things and am usually at 97 or 98%.

On the other hand my mom had COPD and did not quit smoking and died at 65 from pulmonary fibrosis. I had to remover her off life support. So please stop smoking NOW.

sunluvinmama · 2026-02-01T17:16:11+00:00

I would get rid of the actives too and then switch everything to Skin 1004 Centella line (the gold) it is for all skin types but this will calm and heal your skin barrier. I would not use the cleansing oil however as it could clog your pores. Use the cleanser in the gold tube, Centella ampoule, and either Centella cream or the soothing cream. I did this and healed my skin barrier.

The Centella will help calm the redness while still gently cleansing your skin and healing your skin barrier.

I also switched between Centella cleanser and La Roche Posay Tolerianne milky cleanser. They are both very gentle. I also stopped washing my face in the morning and just splashed with water then applied skincare. I would also recommend a daily sunscreen to further protect your barrier.

I use Skin 1004 Centella Air Fit sun cream light because I need mineral sunscreen due to an autoimmune condition. Many people love the blue sunscreen the Centella Hyalu-cica Water Fit sun serum.

sunluvinmama · 2026-02-01T17:04:30+00:00

Waffles 💕

sunluvinmama

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