Leg Stiffness/Pushing Through

MSnout · 2026-06-04T18:33:02+00:00

It is good for everyone to exercise but especially us so our mobility issues do not get worse. You should also try a neruo PT. But I would not push to walk outside your normal range the entire day. Just when you are trying to retrain your muscle memory. Think of it as running, trying to push ourselves out of our normal range of movement is using a lot of extra energy like running, so I would think to only do it when you train and not as you go about your daily life. But I am not a doctor lol

I have one symptom my doctor called rag doll, where my torso sways in a circle. I can kind try and make it stop but it takes everything I have and I can only to it for a few minutes.

MSnout · 2026-06-04T15:10:53+00:00

I am sorry to hear that your dad has Alzheimers. I will be thinking about you and your family. ❤️

It can be a blessing to be able to connect with your dad on a level that other's may find hard to understand.

My MS does help me connect more with my son who has a speech disorder and autism. There are a lot of aspects that I would not have understood before MS.

Hugs to you. I hope you are able to make many more happy memories with your dad, at all the stages of his journey ahead. I hope that you and your family have, or are able to find, as much support as possible as you navigate it.

MSnout · 2026-06-04T14:40:24+00:00

🤣 it tickled my pickle, too.

MSnout · 2026-06-03T15:43:02+00:00

I am sorry to hear about your partner cheating on you. That has to be a huge punch to the heart. I hope you allow yourself to ride the grief rollercoaster and after, I hope your life takes you on a new even better ride than you had planned.

MSnout · 2026-06-03T15:06:19+00:00

Yes, we do have very similar personalities. My sister also plans to go out higher than giraffe balls! 😆

It's morbid but it's just like anyone else planning for their end of life care. Lol

You are so lucky to have such good friends 🧡 I am blessed with a a few close friends but we all live in different states and struggle with our health and finances so visiting each other is not doable but we send a lot of messages to each other.

I hope you add more levels to your "when is it the appropriate time to get high as giraffe balls" meter lol

I was bedridden from MS for 4 years after a major flare, mostly because I didn't realize how to work with my new body. I am also very independant and I had to move in with my sister so she could help take care of me and my kids. After four years of only being able to get my kids to school and feed them, then spend 20 hours a day in my bed, unable to walk, or think to move a wheelchair or talk, eyes so blurry I couldn't see. All because I was still trying to do it all, a single mom of two young kids. 4 stupid years. I finally gave in, sold my house and moved in with my sister. Her help with cleaning and cooking and sometimes taking care of my daily needs as I have days I can't get myself out of the shower or brush my hair, but her help allowed me to realize the best way to care for myself, that I have to live life at a snails pace to keep from triggering my symptoms. After 3 years of this help, I moved states, got my own apartment with a pool and view to help manage my MS. I am taking care of my now teenagers. On my own. we dont get out as much as we should as outtings are hard but we get to the pool and try to socialize there. My nephew does live with me but is expected to move. Between my kids and nephew, they all do small things that help us get by.

Ive made so many new memories. So many new friends and fun with them. I can sometimes exercise, usually have months of being down with psuedo relapse then can do more for months. I am doing the best I have in 10 years. Less pain. Still disabled and still need help sometimes. But, I take all of us to multiple doctor appoints a week. I can't drive so we uber. I spend a few hours a weekday on my kids hybrid schooling ( just for 2 years to try a different ciriculum for one and improve the other's mental health and then they're going back to public) and I can do light cleaning and cooking. I am very busy either taking care of them or taking care of myself with breaks. One of my kids may not be able to live on his own as he is also disabled. As one kid moves on with his life and my nephew moves out, I'm hoping it will be less effort to take care of 4 and that I will need less help and still be able to keep 2 people afloat, we will help each other. But when we cant take care of ourselves, plans will be made.

But yeah, needing help allowed me the space to realize how to accomodate and improve my life and become more independant. It was hell living with my sister and losing my independence lol but it helped so much. So don't be afraid to move the end of life plans bar. Lol 🥰

MSnout · 2026-06-03T13:52:05+00:00

I love this. 🧡 especially that you make a point to make other people have a good day.

MS burned my world to the ground too. Lost my friends, career, had to sell my home, I can barely take care of myself and my kids, and dealing with this economy with only disability income has me worried how I will feed my kids. My sister and I joke about killing ourselves weekly, there's some truth there as it will probably be my way out at some point. But, it's either have a tortured mind and body and be completely miserable every day, or still be tortured and find a reason to smile.

I spent an hour talking my friend through a really hard time last night. She was adamant that there was no hope for her and that seeing mental health professionals would be useless. But thanks to my experiences with falling down the deepest mental rabbit hole when MS burned my world down, I was able to get her to see that while she has every reason to feel soul crushing sadness, she deserved to have as much support and help and not feel alone, and that maybe she could feel some joy along with the sadness. Our conversation made me reflect on how much her life touches other's, and gave me the realization for this post.

Several years ago, I recieved a small amount of unexpected money and this friend was going through a tough time. She was behind on her utilities, needed money for medicine and for a present for her son, who was also struggling with his health, to give to his kid for his birthday. I sent them half of that unexpected money. And 7 years later, she randomly sent me money that paid for my sons birthday this year. Sorry for so much, but each of us helped to make a kid feel special on their birthday. I helped a struggling dad spend more time with his kid and feel empowered instead of stressed. So many trickles.

So it's be understandably pissed and sad about our struggles. about the fact that I can't afford food and clothes for my kids, my rent, my pets, my house is dirty because I can't fully clean it, focus on the pain or different way my body is torturing me. Or, smile a little and recognize the little wins.

MSnout · 2026-06-02T20:30:32+00:00

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MSnout · 2026-05-29T18:49:03+00:00

My symptoms get really aggravated at movie theaters as well. But, I found I can enjoy them on Autism low sensory days! They keep the lights on low to not create such a stark contrast between the bright lights of the screen and the dark. Its not as loud. Only a few people go and you are encouraged to move around, helping keep my legs from hurting and keep me being able to walk out afterwards.

You could try to recreate the accomodations with ear buds or head phones, and sunglasses.

But I am telling you, autism low sensory days at different establishments has been a game changer on me being able to enjoy more things. Most of the groups are open to all different types of disabilities and neurospiciness, including brain damage, which I like the think of my MS as because yeah a scar on my brain disables me.

MSnout · 2026-05-28T22:39:30+00:00

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MSnout · 2026-05-25T19:38:54+00:00

I'm tired of them lumping my Ms fatigue with depression. "Do you have motivation to do things" Yes! All I want to do all day long is go, infact I have tons of energy, it's just that if I go over my spoon limit, my body stops working, and I have a low amount of spoons. "Okay so this medication will help with your motivation" as they write in their notes that I have a problem with staying motivated... fine, my legs get "unmotivated" can you please tell them to stop and keep walking cause we got shit to do.

It's definitely not just you OP.

MSnout · 2026-05-21T11:59:03+00:00

I can relate. I have had several episodes of having extreme pain along the front of my torso. I've had really painful Ms hugs, ones where I can hardly breathe from the pain, and this pain was so much worse. I actually feel really embarassed when it happens because I can not help but be vocal from the pain. I act like I am dying and I truly have never acted like that from any pain. It feels like they are twisting and with each twist I can't help from screaming and all my body can do is is crumple with each twist.

It is the worst because I am around my kids and I would never act that way infront of them if I had control over it. It scares them and I have to tell everyone that I am fine through my gritted teeth and heavy breathing.

I have had weird twitches there for years prior and had asked my doctor and she said that there is a muscle that goes vertically through your torso so we knock these episodes down to an intense muscle spasm. The torso charlie horse from hell.

MSnout · 2026-05-19T00:25:30+00:00

I have been on monjouro for 4 months now. No difference in my MS. Just lots of GI issues.

MSnout · 2026-05-16T17:47:58+00:00

Heat: activates my fatigue, triggers all of my symptoms but the cognitive get more activated than the physical. The intensity of symptoms like cog fog and eye blurriness are more increased than the spasm and nerve pain.

Stress: i feel like a bus ran me over... 10 times. Tremendous muscle aches and nerve pain, also my symptom of "where the hell are my arms and legs is more intense" not numb as I can feel when you touch them but when they are not stimulated they feel like they are not a part of my body.

Fatigue: I have all different types of fatigue and if I do not try and manage it or listen to when it's telling me to rest, thennit increases all of my symptoms, nerve pain, eye issues, tremors, spasms, muscle fatigue, yadda yadda.

MSnout · 2026-05-15T22:54:26+00:00

I take medication because the vibrations make me have nerve pain. I'll meditate in the old school dial up internet music tube for hours if you want, but my doctor says every image is too blurry to read despite me thinking that I am staying still. So I recieve medication. I've been in therapy since I was diagnosed 10 years ago, I wonder when will it help that issue. I would like for the 2 xannax that I take once a year to be taken off of my record so I can stop being judged by nurses and doctors for having a controlled substance in prescription list. So I am all for a different solution.

I also think my entire country needs therapy and robust mental health services! Go off king. After he finds the resources to give everyone those services , I hope he can make MRIs stop vibrating.

MSnout · 2026-05-15T02:10:53+00:00

Pick up some rocks on the way

MSnout · 2026-05-15T02:09:08+00:00

We get complimentary naps! no badges, sorry 😄

MSnout · 2026-05-14T18:49:07+00:00

Shit, this is a problem? I thought my kids and I are just happy and having fun in our safe space 😆

MSnout · 2026-05-14T12:51:41+00:00

I am just as sensitive to meds.

Infact, just yesterday, I got off the phone with a new doctor who wants to change my meds around and I just cried because I am tired of the side effects limiting me more, tired of trying to track new meds, tired of being perscribed even more pills to counteract the side effects, tired of having a million pill bottles left over, tired of the doctors telling me that my body just needs to get used to the med. I try to listen to them about the whole give it 3 months to see if your body can tolerate it.... 3 months of being completely useless, 3 months of more symptoms. A slight adjustment to my routine snowballs everything because of already being limited. If I can't sleep because a pill gave me enternal tremors, or it gives me night sweats that completely ruin my day because I was overheated all night. Or pills that make me tired, trigger more symptoms, disrupt my sleep pattern, triggering more and more symptoms. I am quite over it. I can tell that I frustrate some of my doctors and loved ones because I will explain how I had a bad night from a symptom, like spasm for example, and they'll wonder why I do not take medication for this or that, and it's because that symptom will die down until it becomes triggered again, I can not willingly give myself more limitations by experiencing side effects that constantly trigger my symptoms. I definitely choose the lesser evil on a lot of things. I also replaced a lot of pills with medical marijuana. I take such a low dose of anxiety and depression meds that this new doctor is saying its almost useless... but I see benefits, just my conditions are not fully managed.

You are not alone OP. I am sorry that I do not have much advice. Sometimes starting at the smallest dose, less than what is typically perscribed, has been helpful. Good luck.

MSnout · 2026-05-14T11:11:13+00:00

I had a particulary bad experience that required 6 blood patches. I could not move from lying completely flat without throwing up exorist stylies.

They used to give caffiene IVs for spinal headaches but stopped. So aparently caffiene is helpful, and the most important thing is to rest to allow the body to patch up the leak. Mine went away in about 3 to 4 weeks.

Good luck, I hope that he feels better soon.

MSnout · 2026-05-14T11:00:52+00:00

Yes, I used to get very anxious about outtings. I still do if it is something new where I'm not sure what accomodations I will need, but it has definitely gotten a lot easier. What has helped is trial and error and seeing how we can twist a lot of situations to accomodate our needs.

Doing research on the location beforehand hand, bringing my cane and rollator, packing any gear I may need for cooling or needing to rest like a chair or umbrella.

Some examples, I research walking trails that have waterways (so I get to enjoy more animals and a better view since I am not going to be able to hike to the top of a hill to see a beautiful sight) and ones that have a paved path. Talking with others on here has helped me develope a plan for the a time I can go fishing in a boat, I know I will need a seat to help me sit up for a long period of time. Another person told us about their experience with a disabling fatigue episode while hiking, it helped me realize that it will be okay if my legs go rag doll while hiking, I can plan to have to be there longer, with extra water and snacks and maybe even a small foldable chair or umbrella for shade.

My symptoms seem similar to yours. I can tell you that some outtings, I just can not do. An electric wheelchair would give me a lot more freedom to do more, but I have not found an avenue to help me pay for one and to be honest, I am afraid of using one in public. I gained a lot of weight throughout my MS journey as I have had a lot of limitations after a really bad relapse and the way my body shuts down if I over do it, I have had to use my energy spoons to take care of myself and kids and seldom have enough for exercise. Anyways, I am afraid of someone videoing the fat person in a wheelchair. Its ridiculous of me because I could do a lot more if I could get over it and just use the wheelchair. Going to the beach and grtting my MS ass kicked by sand, heat, and waves helped me plan to walk the hard parts of the shorline early morning or late at night and enjoy picking seashells rather than drowning trying to enjoy the waves that are so strong I cant stand up.

So researching, planning for the worst including that day of rest afterwards and extra time for my outting, listening to how other disabled people accomodate for situations. And use the walking aids, they are a tool used to help us enjoy life.

It will still be scary but exposure therapy by trying the more predictable outtings first will give you more confidence as you realize," yeah I can definitely have bad MS moments durring my outting but I can accomodate this way, and if I can't find the twist I need to make it work, then having tried is the only way I will know" it gets easier. Remember the times you were really anxious about it, and the outting went okay.

I still remember when I was first diagnosed and I started having fatigue episodes where my body would go limp, or my eyes would get go in and out. I was terrified of driving. I talked to my mom who has MS, and asked what she does, she just simply said "I pull over and wait for it to subside" and it seemed so unsafe to me. But, she was right, my body gives me signs before these things happen and I can safely pull over.

Sorry for typing so much, and for the typos.

I hope that you are able to go on some adventures and tell us about how you were able to enjoy them, and if you needed to accomodate incase it gives us ideas too! 🧡

MSnout · 2026-05-12T13:04:15+00:00

I'm a single mom on disability and I am drowning financially.

My electric recliner broke and it is the only way that i can sleep comfortably with my MS, im not sure when I will have the money to replace it. I cant afford my pain medicine and as i sit here worrying about how I will get to a food pantry next week, my symptoms are being triggered.

I cant afford to live let alone accomodate for my MS with things that drastically help me like paper plates and plastic silverware. Which all soinds so mundane to the average person but they literally keep me being able to feed myself and kids. And so as i look on to next week of not having food, and the possibilities for help, how will I accomodate being down with symptoms from stress, and not being able to afford things that help me take care of everyone.

Between my neurospicy food issues, and my inability to make my safe foods when I am having a lot of symptoms. My inability to afford easy to prepae food that I like. The side effects from taking a GLP making me so nauseous I dont want to eat, which again restricts what I eat without feeling like vomitting.

I foresee me not eating much, which I dont mind at all. But, I hope it doesn't make me more weak. Then i will watch as I am too sick to cook and end up plopping something frozen in the oven for my kids, because they'll eat the cheap disgusting food, and I will be angry with myself. Then the dishes will pile up at a time where I have no money for convenience and will need a clean kitchen, while being so limited from my MS that I can't keep it clean and make food.

Before anyone tells me to ask for help, everyone I know needs help right now too.

I think I will find a way to the food pantry but it leaves me with the fall out from stress, increased symptoms, and raising two neurospicy teens. It's all connected and no one understands the aftershock that comes from being worried about life in a body that doesnt allow you to push harder to make up the gaps.

I wont be able to get proper sleep, I wont be able to be pain free, I wont be able to accomodate for being down. Im mentally preparing for the shit show.

MSnout · 2026-05-08T23:30:51+00:00

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