What's Your Opinion?
Posted , 4 users are following.
I desperately need some advice. I am sorry this is so long. I've been pursuing a diagnosis for a longtime but haven't been given anything definite yet. I have seen a rheumatologist for the first time. He gave me several prescriptions and lab orders for blood work and x-rays and I was to return for the results in two weeks. But while at the pharmacy trying to get the prescriptions filled I found out that my insurance had dropped me. This put a hold on it all for almost 2 months while I had to get all of that straightened out. I was able to get my insurance reinstated finally. I've now had all of the tests that the doctor ordered completed and I go back June 5th to see the doctor to find out the results. But at this point I am so sick and my skin is so bad that I am scared that time may not be on my side right now. The joint pain has completely disabled me. The issues that are happening with my skin are disfiguring me. There are several issues that I think may be contributing factors. I think I may have a connective tissue auto immune disorder. But I also have a history of severe constipation. I am talking really really bad. I often get impacted. I've became really sick over this several times. I've read how the poisons that can get backed up into your system from this can cause all kinds of skin conditions. I also have a habit of compulsive skin picking. I do pick until I make sores but these sores are sorta self inflicted. The problem originates from the chemical response in my brain that stimulates my reaction to pick until I make a sore. But I've got a lot of scarring from it and I am wondering if what's going on now could be a reaction to the damage that's been done to my skin tissue from the picking. It can be common to develop calcium deposits inside of damaged scar tissue. The only other thing that I can think of that could possibly be a contributing factor is the stress I've experienced. I've went through some extremely traumatic events. I've been diagnosed with PTSD. Is it possible that this could have triggered a response from my immune system??
The mornings are the worst. It takes me about an hour and a half before I am able to function after I've woke up. My hands and feet are always swollen. I am always stiff as a board all over. In order to just be able to move it's like I have to break every single joint out of a frozen state. But this happens anytime I am sitting still for a long period of time. My neck gets really bad. Sometimes I wish I had arm slings to free my shoulder sockets from the weight of my arms. I also have had issues with my throat. By the end of the day I started losing my voice. But then my eyes started getting so dry that for the first time in my life I bought eye drops. After this started happening I went to the doctor. We didn't focus as much on how my joints were doing cause the doctor was more concerned with my throat because there was swelling. An ultrasound showed nodules on my thyroids. I had tests done where they stick a needle in the nodules and draw fluid out. The doctor wanted to eliminate cancer. It was benign. But I do have several nodules on my thyroids. This may be causing some of this because your thyroids affect so many things. But I am also aware that dry throat and eyes are symptoms of connective tissue diseases also. I have extreme fatigue. By 3pm everyday my day is over with regardless.
But out of everything it is my skin thats the worst. I have noticed that my sweat has became different. At certain times it's like I sweat a lot more and it's stickier. I've also noticed a weird smell. It smells like peroxide. That may sound crazy but it's true. But this seems to happen right before my skin goes through the phases that it does. The texture becomes different like plastic. It seems like thicker pads of skin have developed over my elbows, finger joints and knee caps. Sometimes the sores will appear exactly like little paper cuts. It literally looks like perfectly straight little cuts. At first I did pick at them until I got so overwhelmed with fear because of the whole ordeal. When I did if I squeezed them its like they opened up to little wart like sores inside. But what's so weird is that they usually appear in groups of three and develop into 3 perfect circle sores. Then they become like embedded rocks in my skin. I think it is calcium deposits. The skin gets really hard and red all around the area. It becomes really tender. I have these places all over me. When its all inflamed its the worst pain I have ever felt in my entire life. I literally feel like a raw exposed nerve that's been rolled into broken pieces of glass all over. I am wondering if it's doing this inside of me also. When I look into what kind of sores these could be everything refers to calcium. I did have kidney stones years ago really bad. The stones were sent off and came back as calcium oxalate. They ran tests on my kidneys and determined that I had a condition with calcium in my kidneys. Could all of this just be the result of how my body handles calcium? I don't know what to do. I am trying to figure out what I can do to at least prevent as much damage as possible. Any advice would be greatly appreciated. Thanks.
0 likes, 2 replies
margaret22116 kellsee
Posted
Hey there. I can sense the panic in you over your health issues which I can understand really because feeling so unwell and not having answers can make you feel like that but it would be so much better for you and whatever is going on if you try to control your stress levels.
I have a connective tissue disorder and had lived with it undiagnosed until almost my 40s.
The big positive here is that you are seeing a rheumatologist. Great.
The skin problem could be part of the health issue you have. I can't day if you have a connective tissue disorder. That's for an expert to diagnose. But if you do it is treatable.
Also I would suggest that you try somehow to overcome the nervous habit of picking at sores. If you have inflamed skin this is definitely making it worse. I totally sympathise with what you are going through but you are on the right path and I hope you get the answerd you need soon x
jen6dawters kellsee
Posted
I have experienced much of what you have.
First have you researched online? I print articles to take to my doctors.
For my skin it's definitely related to my gut. I have SIBO which is small intestine bacteria overgrowth. My GI said she has learned a lot from my case. She couldn't believe my skin outbreaks. Everything imaginable. I would eat anything and get blisters within minutes. Every time a doctor put me on antibiotics for something I'd get better. After 18 plus years I finally got a prescription of Xifaxan for 12 months. Then she recommended I see a new dermatologist and I now give myself a shot every other week. It's a brand new drug called Dupixent. If nothing else works for your skin they try Dupixent. Last resort. No side effects except hot flash or two.
Research iodine. My doctor had me take a few drops in water a day.
So far I haven't been prescribed anything for my arthritis. It's better on the two drugs but not gone.
I did get gastritis 18 months ago. Stopped eating anything but vanilla ice cream so my skin would stop breaking out. Lived that way for 3 weeks so I could hold a job. Tried to add bland homemade chicken broth and ended up in hospital. Refused to eat for 3 days and finally ate scrambled eggs. Blisters formed immediately.
Finally my doctor gave me Xifaxan for 7 weeks and skin got better. Every time I tried to cut back got blisters and other things like skin tags.
My diet is ground turkey with rice and butter. When I got better I added boiled mashed skinless zucchini. After 11 months I added saltines. Rice makes a person constipated so I limit it now that I get saltines. It's 10 years without wheat. I get no fiber...grain...nuts...fruit...vegetables except zucchini. Just added Haagen Dazs vanilla ice cream again after months.
I feel hopeful now with new drugs. Added gelatin in my drinking water. Love aloe in my water but gives me diarrhea which makes my skin itch. Gas makes me itch that's why I avoid fiber.
You can research histamine foods too.
Take notes about what you learn and find a doctor who will listen.
I also have PTSD. Anxiety makes us worse so find something to distract you or take something or see if you can drink calming tea. Tea and herbs make me itch.