hEDS, flexibiity, surgeries

When my chronic pain started, I never thought there was a name for it other than, chronic pain. At the time I had hypermobile SI Joints & was getting ready to have them fused one at a time starting in 2016. By 2019 I was diagnosed with Hypermobile Ehler’s Danlos Syndrome. It made sense, so many things growing up, trying, & after having children… so many things. However, with the flexibility and shitty collagen production comes… surgeries. Many of you know that in September & October I had surgery. In September it was De Quervain’s Release, a tendon in your thumb/wrist. In October I had a piriformis release on the left side. Everything was healing, I was taking it easy & by the end of November, I was feeling good. So I decided to craft! It’s what I do around the holidays & makes a little extra money with a side hustle since I can’t work anymore. During the ornament making, my wrist & thumb started bothering me. I took a break after making a bunch of ornaments, thinking that I would give it a rest & get back to it. I was put on prednisone for any inflammation & my right hand felt great! I tried to do a craft, but after the prednisone was finished, the pain came back & once again gradually got worse. So, I broke down & went to the Dr. about the pain in my thumb & wrist because I can no longer move my thumb or wrist without severe shooting & sharp pain going from my thumb through my wrist and the webbing between my thumb & forefinger on my right hand. I am back in my brace full time to keep me from moving them. My Dr had to take measurements of the movement in my thumb & asked if I was ever a skier. (I have only been skiing twice in my entire life) His thought is that I tore/ruptured the ligament without knowing & it never healed correctly or that I had somehow fractured or broke my thumb & also never got treatment & now I can’t use it. Of course, it’s my dominant hand too. I have to go back in 3 weeks after I have an MRI of my thumb & wrist. I have this feeling that I will be having ANOTHER surgery in January. Chronic illness is no fun… it’s literally one thing after another. I’m never pain-free. I can’t remember a time that I had no pain even with taking pain killers on a daily basis. Sometimes they just take the edge off. I’m having a hard time with this right now. I can’t finish the ornaments that I promised people & last year, it’s what got me through the holidays. Some of them are gifts & one set of them was an order from a family friend for 11. I got more than half of them done, but I can’t finish them all because it would be at the expense of my hand. Plus, the colder the weather, the more I hurt. I can’t walk because the cold gets in my joints & the 4 screws I now have in my SI joints. My hips subluxate at will & all I can do is lay down with rice pillows on them & wear my compression pants. My shoulder dislocates in my sleep, so I have to roll over on it to get it to go back & wear my compression shirt to keep them from sliding out. The winter is very hard for me. My lower back gives me all kinds of problems so it’s a TENS Unit &/or a rice pillow for that too. The thought of another surgery on my dominant hand is very disheartening. The Dr told me that my thumbs are very flexible & that right now my right is slightly more flexible than the left. He measured 4 times because he was just trying to make sure he was reading it right. Any good vibes or spells or rituals that I can possibly do would be great. Some days, someone to talk to would be awesome. On top of everything else that I have going on this year, another surgery wasn’t even a consideration. I am doing so much better mentally, I recently came out of my shell. I know what I want after the holidays & after I receive my Social Security payments that I was approved for on November 12, 2020. It’s just getting the retro pay & starting the regular payments. I left a message for my caseworker today about it because I should have already received them according to my field office, but somehow my minor child is holding up the application now. I have better control over my anxiety, but it would have been nice to get those payments before the holidays. So, please, any good vibes would be great. If anyone has any questions, I would be happy to answer them. I also would be the one to have a “rare” congenital condition along with a few comorbid conditions.

hEDS Summary/Symptoms/Cause/Treatments
What is hEDS

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I am so sorry you’re having this many problems with your hand. And with getting your Social Security. I’ll be keeping you in my prayers and sending you lots of love and good vibes! Hopefully, that’ll get Social Security off their bums. Sometimes you’ve got to be proactive. It’s hard sometimes but you’ve got to advocate for yourself. Wishing you much love and healing!

:purple_heart: :hugs: :purple_heart:

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Thank you! I’m calling tomorrow morning & I will leave another message if I have to and keep calling. If I don’t hear from her by Monday I will call her supervisor. They told me after 2 days to go to the supervisor because they have 48 hours to get back to a client.

My hands never gave me problems until last year. Or none that I noticed before. I found out that I regularly dislocate my fingers & knuckles. They go back by themselves, but I don’t notice it. The only reason I know is because when I was in occupational therapy, she was doing something to my hands & noticed light bruising around my knuckles. I had no idea that I did it. But it happened a few times when I would go there. She gave me soft braces for both hands at that time. I was wearing compression gloves. Since then I have more issues with them & no matter what is going on with me, it always starts on the right/dominante side. My hips, my SI joints, my piriformis issues, sciatica, shoulder dislocating, ankles giving out, knee pain from hyperextending… all of it.

I had gotten to the point that I didn’t need the soft braces or compression gloves. Then I messed up the tendon in my right hand & got the hard brace. About a month later it was my left hand. So I have a range of supports depending on what my hands are doing. My favorites in the winter are the compressions because they also keep me warm. My hands, feet, & knees are always cold.

Thank you so much for your support & positivity.,

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Yeah, I had to finally go to the supervisor in a couple of places about my medicaid helper. But at least I have a case manager now and a phone number so I can call and be bothersome. LOL. Hopefully you’ll get your answer Monday and you’ll start the New Year with some money coming your way.

Eek. Dislocating fingers sounds painful! I’m glad your compression gloves keeps you warm. I’ve noticed that my feet don’t get as cold when I have these Unna boots on for circulation and healing up my legs. That’s a good thing.

You’re welcome for the positivity love! You’ve supported me just as much. That’s how things go around here. ~HUGGLES!~ :hugs:

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They say that the squeaky wheel gets the grease!

I don’t feel it actually. I only feel it in my hips & I don’t feel my shoulder until it goes back in place. I am also the coldest person in the world, so doubles layers in the winter helps me more than one way in winter. The summer is the only time I don’t have to wear layers to be warm during the day. In the spring & fall, I just use blankets.

Thank you :hugs: :heart:

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The hearts are sometimes a weird thing on our forum. :wink: Sometimes I use them because I really like what someone says. Sometimes I use them because I love the positivity or encouragement or thank you’s I see. And in this thread, the reason I use them is because I really care, @krissie117. I hate what you are going through. I appreciate the updates because it helps me with how to use my spell work concerning your healing. But when you see a heart from me on a post about your pain, know it’s me saying, “I’m here. I care.” Hoping you find healing soon.

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In any situation, any time of day or night, I’m right here. I hate that you’re getting hit with one thing then another. Your hand and well being is the important thing, ornaments can wait, though I know you enjoy doing them and right now the extra cash would help. But you come first, because without you peanut would be lost. Take this time to focus on you, read, speak journal when the house is empty.
Healing energy and loving thoughts sent your way. :smiling_face_with_three_hearts:

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My heart goes out to you @Krissie117- I know you’ve been trying hard to stay strong and keep your head held high despite the surgeries and struggles this year has brought you. You’ve been fighting a long and hard battle- so I am so glad you have found yourself so much love and support! :heart: You have your wonderful family, your hard-working doctors, and of course your loving coven here to help pick you up when the fighting gets tough. I’ve got my fingers crossed the SS payments come through soon and that the upcoming surgery also goes well :hugs: So much love and light to you, Krissie!

Also- thank you for sharing the links to additional info in your post! I wasn’t too familiar with hEDS before, so I always appreciate new knowledge to help me better understand :pray:

And I just have to say I love @praecog29’s input about the hearts- you put it perfectly!

:heart: Love :heart_decoration: Encouragement :hearts: Care
:smiling_face_with_three_hearts:

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Thank you so much! @praecog29 I appreciate your caring & continued support. I post more about it elsewhere, I try to keep it off the Spells8 forum. It just all hit me today with the appointment, the braces, the holidays. Some days are harder than others.

@Tamera thank you also! I know you are & the coven is here whenever I need them. I appreciate our friendship more than you will know. I’m getting used to (or trying to) not being able to do things that I love whether its a temporary situation or I’m grieving another loss of what I used to do thank you for your support too!

@TheTravelWitch you are welcome for the links. I figured no one really knew what it was, because I had no idea until my friend had asked me to be checked for it. Another comorbid condition is called a Chriari Malformation. I do not have that, but my oldest son does, as does my friend and her son. That is what brought our conversation about my condition came about. I have know for 18 years that Parker has it & no idea that it had anything to do with what I have. I passed it to him & that was something I had to take in & process when he was 3 years old. I left a link for his condition also.

It has definitely been a Rollercoaster since August. I try harder everyday over the past & the next to stay positive. I’m still seeing 111 & 1111 everywhere. I feel like amazing things are going to happen after the holidays. I just have one more thing constantly. Its like a test that gets harder the longer you sit down to concentrate & whether or not you have studied. I certainly haven’t studied because I never know where to start

Thank the 3 of you! You have no idea how much the hearts & comments mean to me. I feel like there is always someone listening. Even when I feel self conscious. As time goes on, that happens more & more

@TheTravelWitch as for social security, I’m avidly working on getting in touch with someone. Im behind on my mortgage & would like to clear that up & be able to sleep better. I’m happy that I left a message today, it feels very grown of me to be doing something to help move things along. I waited patiently for 2 weeks & was blown out of the water this evening.

Please anyone, feel free to ask questions about my son & my conditions. I habe added a website for Apocalypse 2020 is in effect.

I don’t want to say things that confuse people so im linking information about my son’s condition also. I am adding the links now.

Much love to everyone :hearts: :hugs:

Arnold Chiari Malformation

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@kasie, @praecog29, @TheTravelWitch, @Tamera… thank you for all of your positive energy & support.

UPDATE***This morning, just after 10AM my caseworker at Social Security called me & I have an appointment with her Monday morning at 10AM to finish my minor child’s application for benefits. I will be getting my payments very soon afterward.

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WOW! That’s great! Hopefully they’ll start with the New Year, start 2021 off right! Very cool!

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GEEZ… I think we need to wrap you head to toe with compression fabric and put you in a human size egg crate. On a more practical side.

Healing Spell Chant

“Wrap thee in cotton,
Bind thee with love.
Protection from pain
Surrounds like a glove.
Brightest of blessings,
surrounds thee this night
for thou are cared for.
Healing thoughts take flight.”

I found it on pinterest. It seems to fit. :two_hearts: :two_hearts: :two_hearts:

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OH @berta thank you so much! It’s wonderful & very fitting.

Today I’m in a pain flare, so I’m on my couch watching Christmas movies. My daughter says bubble wrap should be my go-to clothing. The one time I did go out because no one would go to the pharmacy, I was in too much pain to get my walker out of the car. So it wasn’t pleasant. I made it home, but this isn’t something I would wish on anyone. My hips are subluxing repeatedly (partially dislocating) & my back is awful plus the ongoing pain in my wrist. I’m taking the time to take it easy & hopefully tomorrow I can wrap gifts & do some baking.

I really appreciate the chant & I tend to joke about my conditions because it’s my reality now. I also try not to bring others down with it, but I have my moments that I need to get it out. :heart: I could list them, but who has that kind of time on a Saturday.

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Congrats on the update from Social Security, @Krissie117! :partying_face: It’s great the payments are coming soon- you’ve been fighting for this for a long time! It must be a big weight off of your shoulders :blush:

Sorry the pain has been tough lately- I imagine the cold and slushy snow doesn’t help! Take as much time as you need to rest and build up your strength. I hope the pain fades away and you find yourself feeling good and energized again soon :heart:

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Krissie,
I can’t imagine how much your going through, but I am here for you! I love your energy here and glad that you have found us here! Surgery & chronic illness and pain. I have no idea what it’s like to endure such pain. For that I can appreciate that you keep going to the doctor and take it day by day. I know it must be very difficult to deal with da to say because of your love for the craft as well! As of know try to rest and be good to your self! The craft has thought me self love! I will see you around the forum let us know if you go through surgery January so we can send you out love! Love and light! You are a survivor and you be well!
Blessed be
Jeannie

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Thank you, it really is a day by day thing. I never know how I am going to feel when I wake up or how much I am going to be able to get done. On my good days I try to practice at least one thing from my craft and on my off days I make sure to journal a little bit more than I would on a good day.

I will let everyone know what happens after this coming Thursday. I have my MRI on my hand on Tuesday and then I see my surgeon on Thursday. So I will have more of an idea what is going on at that time. I also see my rheumatologist on Monday, so I have to let her know about my ribs & my hips when I see her. Then in February I will have physical and occupational therapy to go to, but this time I am only using half of my benefit in the beginning of the year and the other half later in the year.

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Good luck with the doctor’s appointments! Hopefully it’ll be good news and they can fix you right up.

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I hope so because right now I can’t do anything with that hand without a lot of pain. My steering wheel is a problem, I have to use my left hand. I’m hoping they have a plan on Thursday.

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I know going to the hospital time after time can be difficult. Do you have support? Or do you ride with anyone? I pray you do have someone to help out around the house too!
when you get pain close your eyes and think of a happy place! That might be tough at first. For the first time today I woke up and my butt had a pain in the middle. Felt uncomfortable :hot_face: Never have gotten a pain like that. So maybe use a warm towel or ask the doctor what is the best thing to do.
Anyway, I am just trying to give you some comfort! I am not really good with that but I care so I do my best!
I wish I could take it away for good! Let’s hope you get the best doctor ever!
Blessed be
Jeannie

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@krissie117, positive energy your way! May you get relief from everything soon.
Blessed be

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