Myotonia Congenita

At 56 I'm a young nana. My 3 children have blessed me with 12 grandchildren ranging from 18 years to 7 months. Rewind to August 2010, I was like any other average grandmother. Going to their events, parks, playing ball, board games, video games, sing-a-longs, strawberry picking, horse back rides, etc. In January 2010 my health started to change. In 7 months I lost my job, my relatively normal health and my independence.

Fast forward to 2022 I have 10 verified diagnosis' and level 3-4 pain 24/7. Everything takes more energy than I have. I still make sure I attend all birthday parties, Christmas and as many other events as possible. It's now too difficult for me to take all of each family's children at the same time. I'm currently spending a few days with each child before school starts with the exception of the youngest 3. I have 3 kids to go in the next 2 weeks. I don't want any of them to see how difficult spending time like this is on me. I literally sleep 1 or 2 days after they go home. I don't cook for myself daily and even just getting 3 meals a day for them is debilitating. I pray they never know what it costs me.

I am so thankful for this time no matter what my personal cost is. I'm very close to my children and I know that even after my memory or I am gone that they will keep my memory alive. God has blessed me and I am so very grateful for them all.

Thank you for reading! I hope you find something every day to be grateful for. Every breath is a gift if you believe it or not. 🙏🫂
#RareDisease #MyotoniaCongenita #Fibromyalgia #Depression #Paresthesia #Neuropathy #formication #Ocularmigraine #EssentialTremors #SleepApnea #DegenerativeDiscDisease

"When he told you you're not worthy
When he told you you're not loved
When he told you you're not beautiful
That you'll never be enough
Fear, he is a liar
He will take your breath
Stop you in your steps
Fear he is a liar
He will rob your rest
Steal your happiness
Cast your fear in the fire
'Cause fear he is a liar"

I was listening to my iPod last night with my mind wandering until this song came on. It fits so many of us with fear, doubt, questions about are we sick enough or need to get out of a bad situation. Look the song up and listen to the lyrics and not worry about the genre. #Fibromyalgia #RareDisease #MyotoniaCongenita #Neuropathy #EssentialTremors #Osteoarthritis #Paresthesia

I'm curious. When I want to lend support or answer a question I have to join that members group to do so. Is there a way to comment without joining that particular group? There are groups that I'm in now for conditions that I don't have. I don't want to misrepresent myself. Is there a different way to post that I don't know about? Thank you for your time in advance! 🌞 #Fibromyalgia #MyotoniaCongenita #EssentialTremors #Neuropathy #formication #Ocularmigraine #Depression #Paresthesia #Osteoarthritis

I have several well-known diagnosis' and one rare, myotonia congenita. I believe that my brother has myotonia congenita also but refuses to get genetic tests. We share some of the symptoms.

Some of the more common diagnosis' we do not share. When I try to explain how debilitating fibromyalgia, essential tremors and osteoarthritis are for me. He, as usual, says he has pain too but has no choice but suck it up and push through it. I can't seem to convince him that our pain levels or types can vary wildly. I'm not sure what to say to him at this point.

He and I are in a position now where our parents are requiring more at home care. Each have different stages of dementia. This is a delicate matter for the four of us. So I need to do my part in their care. Especially our mother who struggles if I'm not with her several times a week. During the current discussion between my brother and I he told me that he needs me to step up more. He thinks I don't know that?! I feel guilty enough for not doing what I think is enough.

Our parents live in his basement apartment and I live 10 minutes away. He now has a lake house as well. He wants to pick up and go whenever he wants without notifying me until the night before. Which means I have to pick up the slack so to speak. I wish it was easy for me to just get ready and leave my house. We all know that it's not that easy or simple. My parents have a spare bedroom but he and his wife don't want me to live with our parents. Just come over 3-4 times a week for a few hours he says. I struggle showering or even cooking for myself daily. I'm at a position where I need extra care myself. But I'm at a loss at what more I can say to him. It's a no win situation for all of us. Thank you so much for listening to me vent. Have a great day! 🙏 #Fibromyalgia #Depression #Paresthesia #Neuropathy #formication #MyotoniaCongenita #EssentialTremors #RareDisease #Osteoarthritis

I finally saw my muscular geneticist at John's Hopkins Hospital in Baltimore today. My muscle strength and reflexes have to be guaged. Pushing and pulling on my limbs and feet. I have been struggling for over a month with this fibro flare and today increased it exponentially! I'm not sure what the instrument is called but I call it a hammer. I know that after it's used, if I'm not already in a flare, I will be afterwards. Because of my balance issues the doctor wanted her PT to examine me. Guess what she did?! She did exactly the same push, pull, hammer stuff my doctor did plus a few other tortures lol. It's a 4 hour round trip car ride and my appointment was 3 hours. I'm beyond exhausted. I'm sure this happens to a lot of you and I am not alone. It's a music and pain meds night at the very least.

It's therapeutic for me to be able to tell you all about my experience. No one else understands and most of the time I don't say anything to my family anymore. I feel like they zone out in the conversation. I did speak to my sister in law over the weekend who has constant pain like I do. I mentioned The Mighty app and her face lit up and she said I love that app! That made me feel good knowing this community helps someone I love. 💜

Anyway, thank you for listening! Stay strong my friends!! 💪🙏🎶#Upallnight #RareDisease #MyotoniaCongenita #Neuropathy #ChronicDepression #formication #EssentialTremors

I've had 3 high pain days in a row. As we all know it's exhausting! In spite of the pain I've been able to sleep until tonight. The pain woke me up tonight and I can't sit still. I'm very conservative about taking my pain meds and I've been using items from my "medicine bag" which is mainly relaxation and puzzles to distract myself. Nothing on my list helps when my pain is above 6/10. I just took my last pain pill. My new prescription won't be here until June 30th. I'm not sure what I'll do if this happens before it gets here. I'll surely seek out your support as I am now. I count my blessings everyday. Thank you for listening if you made it this far. I appreciate it. I hope you are having a better night than mine. #Depression #Neuropathy #Paresthesia #Fibromyalgia #EssentialTremors #Arthritis #RareDisease #MyotoniaCongenita #formication

On those days when I can't find the energy to get up and move I certainly don't want to food prep. My question to you Mighty friends is what type of portable, low cost snacks do you have close by? Items that don't require a refrigerator or cooking. Right now I only have mixed nuts, fiber brownies and fruit cups, not much variety. The nuts I buy in bulk and portion out. T. I. A! #RareDisease #Depression #Paresthesia #Neuropathy #Fibromyalgia #MyotoniaCongenita #EssentialTremors

Today is a huge milestone for my family. My first grandson's graduation and farewell to the Marines party. I have been looking forward to this day for a long time. Only today I feel like rubbish. I'm anxious about having to shower, what to wear, how big will the crowd be and fear of disappointing my grandson if my behavior seems off. I know it's time to step up but it's not easy at all. Disappointment is only one of my worries but it's front and center today. #Fibromyalgia #MyotoniaCongenita #EssentialTremors #Neuropathy #formication

I'm always sitting down, getting comfortable and guess what?! I forgot what I originally got up for. We all have these moments. Last month after having a particularly rough day I racked my brain for a solution.

3 years ago I bought a cart at a craft store to sort my crafting items. It dawned on me that this is a perfect solution for me and bought another one. I put most of what I might need in one spot and free up shelf space for other things. My purse hanging on one side and my lap pad on the other. Now I have my meds, water, journal, puzzle books, coloring books, fidgets, etc. at hand.

Another tip I want to mention are disposable toothbrushes. These "wisp" brushes come preloaded with toothpaste and require no water. I use them on days where I can't imagine hygiene possible. They are very inexpensive. Thank you for reading and have a great day!
#RareDisease #MyotoniaCongenita #Fibromyalgia #Depression #Paresthesia #Neuropathy #formication #ocularmigraine #EssentialTremors #SleepApnea #DegenerativeDiscDisease #Osteoarthritis

For years I had the sensation of bugs crawling under my skin. I'd tell people and they'd say that I'd lost my mind or isn't that something crazy people have?! I tried so many lotions, oatmeal baths, you name it. It always happened at the same time of night. It wasn't every night so it always caught me off guard. The sit straight up out of your sleep off guard. One night it was so bad that I called the suicide hot line at 4 a.m. I just wanted it to stop, be over and I would have done anything for it to stop! The wonderful man I spoke with calmed me down and made me promise to call my primary doctor the next day.

I got an appointment and told my doctor my experience verbatim. I told him if he couldn't help me he'd likely never see me again. Thank God that I have a wonderful doctor. He said that I have formication and prescribed Doxepin at night. Later this started during the day as well and he prescribed Citalopram.

Formication is the sensation that bugs are crawling on or under your skin when they don't really exist. Causes include mental health conditions such as depression, medical conditions like Parkinson's disease, certain prescription medications, or drug use. The symptoms mirror many fibromyalgia symptoms.

I've noticed a few fellow members mention the feeling but never a diagnosis. Help is out there. Let your doctor know. I hope it works out for you too. 😁 #RareDisease #Fibromyalgia #Depression #Neuropathy #edema #formication #EssentialTremors #MyotoniaCongenita #MuscularDystrophy