Mixed connected tissue disease

[Amyd43]

Question has anybody have multiple illnesses with a mixed connective tissue disease do you have everything that has to do with mix mixed connective tissue disease also something with your autoimmune disease I wake up in the middle of the night every actually I'm not sleeping and when I do fall asleep I get what woken up with this pain in my fingers every single night I close my eyes and I open them back right backup I have that I have Raynaud's disease please let me know and what do you do I'm always in the hospital now I have to go to the hospital to do my blood work all the time because they can't find any veins I have scar tissue am I left arm has anyone else had this issue please let me know I'm from the US so please hit me up and let me know what you doing

[Jaylowdancer]

Hey, I also suffer for MCTD and from NYC. It started out with hard breathing and painful joints. The doctors have determined so far I have: rheumatoid arthritis, mctd, pulmonary fibrosis and ild. Yes everyday is a struggle. The doctors and i have done many types of treatments in order to control my RA and MCTD and lung disease. It toke us 3 years to finally get under control. However, i still suffer from joint pain and swelling. I take extra vitamins to help and went back into working out. And when im super tired or fatigued i just stay home and dont do anything. You learn to know when you may be getting or when your having a flare up. Everyone has different coping mechanisms in order to keep on going. I choose dance. I also have a 6 year old and she has my passion for dance too so i keep myself busy. It helps to not think about what pain i may have by doing and just do it. Secret: I’m also using CBD. It so helps with pain when i need sleep. I sleep thru the night. I use either the gummies or the vape for bed. I have oils for my joints. This also has helped me a great much. If you have more questions message me or let me know.

[miccika1]

Are u working w your rheumatologist? What is your therapy? Why do you need to go to the hospital? Reynaud's is part of MCTD, and not a separate illness, and depending on the severity your doctor prescribes different types of therapies.

[Amyd43 in reply to miccika1]

I have been but because I had do blood work and it's hard for any of my my nurses to take my blood because of my vines there so small that there end up collapsing and I speak into the microphone I dont text

[honeybug]

Hi Amyd43 😊🌿🌸🦋

I’m not able to text well now recovering from steroid treatment for bone on bone OA in my thumb and in a brace.

I’m in Michigan. I have your issues plus about 57 others.

I’ve followed you so I can chat after my hand is better

What state are you in?

I don’t sleep...sorry for late hour reply. Just found your post and when my narcolepsy like sleep hits I can’t control the hour of activity abilities so reply when I can.

Hang in there sweetie.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

[Amyd43 in reply to honeybug]

I speak into the microphone I dont use my hands

[Amyd43]

FL

[honeybug]

Hi Amy43 😊🌿🌸🦋

Apologies for my late reply.

Yes I have other illnesses plus mixed connective tissue. I have autoimmune diseases too.

When I was able to sleep in my bed I was awakened with finger pain (all 10). I was clinching my hands into fists while asleep. I resolved the pain issue by placing a soft cloth diaper (just used for this purpose only) formed into a ball shape just big enough to fit my hand. It was soft and smooth so the texture didn’t cause a reaction. I slept for years this way and the pain never returned as the diaper kept my hand open.

Yes my veins in my left arm are no longer easy for blood draws. My right arm still is. I usually tell the phlebotomist to use a butterfly needle as due to their tiny size they are the most successful.

I’m in Michigan. Where are you from??!

EJ 😊🌿🌸🦋🙏💗😘😇🕊

[Amyd43 in reply to honeybug]

I'm from Ny but I live in fl now a days I only sleep for 2hours then I'm waking up with pain in my hands and my face burns and it gets red and hard I'm not in the sun I'm in my apartment & it swollen my hands turn purple in the cold and my doctors say I have everything that is in the mix connected tissue disease

[honeybug in reply to Amyd43]

So nice to meet you Amy.

Wow ...sleeping 2 hours nightly is just what I did decades ago.

The symptoms you described sound a lot like Erythromelalgia regarding being hot. The cold sounds like Raynauds. I have them both. They now are cyclic so which ever one triggers first the other one follows right after.

My Erythromelalgia was diagnosed by DNA testing and the top Neurologist at the Univ of Michigan. My Raynauds Phenomenon was diagnosed the same time my dad was diagnosed with his. I was 12.

EJ 😊🌿🌸🦋🙏

[Amyd43 in reply to honeybug]

My face starts with the burning and the my hands hurt did u lose your hair cause I'm losing my hair I just told my son about I think that I had this 6 years ago and there never try hard enough to try and figure out want was wrong with me and it had just bj ot worst overtime I always hurt

[honeybug in reply to Amyd43]

Hi Amy 😊🌿🌸🦋

Sooo sorry you're suffering sweetie.

Yes I started losing my hair decades ago. I have alopecia areata. Plus my thyroid was destroyed by my autoimmune diseases. It’s really thinned out. I lost most of the hair on my body except face.

I am taking Paxil 20 mg. My ⭐️ neurologist prescribed it for my burning. Yes its main use is for anxiety but she told me that a study of women were given Paxil to control hot flashes and it works to control them. She said that’s it’s been used on Erythromelalgia burning and controls it too.

I’m living proof it works on the worst kind of IEM burning that I have. I’ve been blessed in that I’ve not had the worst flare up involving my head and airways since using Paxil.

I had no side effects from Paxil with exception of the usual drowsiness the first 2 weeks.

You start out on 10 mg then if you are side effects free you can titrate up to 20 mg.

Also try really restricting your salt intake by reading all labels and asking vendors for the salt content. It really makes my burning worse.

Do you have neuropathy too?

xxx

[Amyd43 in reply to honeybug]

The medicine that they were giving me the same exact medicine that you take they told me to stop taking cuz it was making me extremely dizzy and I couldn't function function throughout the day the other one they gave me and starts with a h it's a long one my primary doctor told me to stop taking up as well I'm supposed to go see a neurologist because I am experiencing tingling from my head to my toes I don't know why what about the face does your face get hot and feels like you're in the sun baking and you're not you're at your home because I feel like that everyday I know that mixed connective tissue disease it takes thank you you could have it in your childhood years and not even know it and then as you get older it just gets more severe and for me mine is more severe and plus my autoimmune disease is not helping either so I'm kind of stuck and plus I'm having surgery on the 6th for my shoulder because I can't lift my hand all the way I can't brush my hair cuz it hurts so much my hip hurts as well so I'm trying to fight the battle but it's it's really hard becoming really hard for me to do it but thank you I appreciate it

[honeybug in reply to Amyd43]

Hi Amyd 😊🌿🌸🦋

Ohhh I’m so sorry about your problems with the meds. It works so great but as we’re all different in tolerances it makes things so hard for us to get relief because of it.

Re the face getting so hot...it has a vast blood supply which explains the bigger bleeds when cut. Because of this fact the volume of blood also created heats as the veins are engorged. This is what happens when our faces feel so hot. Remember how you react to being embarrassed?? I was always blushing deep red when embarrassed. Nowadays I go lobster 🦞 red everywhere when stressed and during flares or overheating thanks to good ole IEM.

As for the tingling head to toe I have that too. Diagnosed with idiopathic neuropathy about 5 years ago now I was given Gabapentin 2400mg daily. It doesn’t take the pain all away but makes it more tolerable.

I have autoimmune disease too. As you know this hideous condition attacks whatever it wants. Nerves are subject to those attacks too. My first bout of numbness was age 12.

Yes MCTD isn’t easy as you know. I was in my 20s when I was diagnosed. Struggling with one condition is hard enough but with multiples it seems crushing at times from it all. Then adding the increased severity with time it’s so cruel.

People who are blessed with good health are mostly clueless how well off they really are.

I’m sooo sorry about your shoulder damage and suffering. I have prayed for your surgery success and for endurance and a full and quick recovery. Remember that any discomfort during the therapy aftercare is a hurts so good pain as it will get you to your end goal.

You take care dear Amy. Best wishes in all things.

Abundant blessings sweetie.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

[Amyd43]

They use a butterfly and still dose not help NY but I live in fl

[Amyd43]

Sorry I have not been on in a while in and of the hospital always in pain see all t these doctors some times I can't talk right I shaking alot in my hands when I walk this a is so hard the not knowing when there do my blood work everything comes back find but I have mix connection tissue disease plus DVT PLUS OTHER HEALTH ISSUES THAT THERE CAN'T FIND OUT ABOUT IM JUST GETTING WORSE AND SOME PEOPLE IN MY FAMILY THINK I'M MAKING THIS UP MY DAUGHTER IS ONE OF THEM MY HUSBAND HE JUST DOESN'T UNDERSTAND WHY THIS IS HAPPENING TO ME MY SONS DON'T GET IT MY MOM THINKS IM LYING ITS ALOT TO DEAL WITH WHEN U DON'T HAVE THAT SUPPORT.