Ugggghhhh.... new issue that really stinks. - My MSAA Community

My MSAA Community

6,903 members β€’ 16,852 posts

Ugggghhhh.... new issue that really stinks.

Allen5280 profile image
Allen5280
β€’63 Replies

The past few weeks I've been dealing with something new and unwanted! 😑 I wake in the morning thinking ok do I want to get out of bed now? Do I feel rested? Is it time to get up yet, then all the aches and pains of sleep and cramps say; get up and move! So I roll over to the side of the bed, sipn myself around and place my feet on the floor. As soon as I begin putting pressure on my feet, they bind and hurt like every bone in my feet are broken. Ughhhh the spasticity and neuropathy are excrusiating! I takes Mutiple attempts to even get up of the bed ffo the sink where I can use my upper body to reduce the pressure on my feet. It takes a long time throughout the morning t o get to where it lets up. The only thing that really helps? Is pushing through the agony and moving my self to work out the cramps all the while feeling like I'm doing it across hot coals and broken glass....ugggg... So I have been needing my medication first thing just to make it through coffee and a shower. I really hate MS today!

63 Replies
β€’

I hope things get better for you. ❀🌷

Thank you, just two issues flared at once and it will be ok. Making my mornings a little more difficult.

carolek572 profile image
carolek572CommunityAmbassador

Allen,

I know when it’s time to get out of bed because of the cramps and very sore joints. Is it the mattress? No, I believe that it is the inactivity and being in one position a little too long. But doing too much during the day also presents its own challenges. A ying/yang tug of war, ever present! ms is always present, letting us know that we should give it the attention that it thinks it deserves, but I would love it ignore and kick it away, but I know that I would do that at my peril! But adapt we must. And you seem to adapt as best you can.

Stay Strong,

Carole :-D

Allen5280 profile image
Allen5280 in reply to carolek572

I think it is due my activity levels too. There have been non stop events the past couple weeks that have been pushing my limits. Friday we had torrential rains, around 5 1/2 inches. Flash flood made me scramble to get to safty. I thought it was going to be the day I sold my travel trailer to the Ins. Company. The water was rising really fast, and im slow. By the time I knew I needed to leave and I actually got ready the water had risen several feet and I was in ankle deep water all the way out to my pickup. That was around 11am and I coukdnt return until about 5pm. Some of my unsecured items floated a little ways away but water never made it up into my RV. It took some time and drenching even through my rain gear to gather up the misplaced items but all in all it worked out ok. It's always something pushing me to keep going even when I know it's time to quit, that's just life.

carolek572 profile image
carolek572CommunityAmbassador in reply to Allen5280

You do what you need to do, if you’re like me, you pay for these efforts! But I survive, and I go on, and I must! And I rest, because I really have no choice.

Carole :-D

eharoot profile image
eharoot in reply to carolek572

great description !!

Sorry about your new symptoms Allen5280 . Foot pain is terrible. I had surgery on both feet for Plantars Fascitis ( excuse the spelling I’m sure) but it’s hard to do anything when your feet hurt so bad. Praying for you buddy.

Donnie

Allen5280 profile image
Allen5280 in reply to Doubled51

Donnie, foot pain sucks! LOL reminds me of when I was little and my sister would tease me with a rhyme.

Bang, bang your dead,

Brush your teeth and go to bed.

Comb your hair with a wagon wheel and

Die with a toothache in you HEEL.

I have to laugh about it now cause I'm sure I said it back too so... careful what you wish for!!! πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚

Oh that sounds horrible Allen! I'm so sorry and hope later today - tomorrow is better for you! Good for you pushing through and sharing as I'm sure your not alone.

Thank you Juliew19673, it will be ok, just a bit on the aggravated/ irritated/ grumpy side.

and you are allowed to be on the aggravated/ irritated/ grumpy side of life! be good to you my friend

I really thought that the butterfly πŸ¦‹ was going to be a turn around point of events. At least you got out there and collected your items which proves you still have it in you. Pain really does suck, unfortunately it’s an acquired side affect of our friend ms. I think there maybe some truth in what Carole is saying, some of it could be due to us lying in one position all night. I know my legs feel so heavy and weighted as I can only lay on my back due to my neck. So maybe if you wake during the night, do some stretches or get up and stretch them, then go back to bed. Praying for your pain to subside, blessings Jimeka πŸ™

Allen5280 profile image
Allen5280 in reply to jimeka

Oh I know carolek572 is exactly right. The Spasticity gets ahold of me even during the day if I don't get up and move every little bit. If I wake during the night and don't get uninteruped sleep I suffer as well. It's one of those double edge swords. As for my butterfly, I know it is a comfort and I know it means things are going to get better. May not be this particular moment, may not even be in this life but the one to follow. That and it has given me a boost in my resolve, which had become almost lost. I need the boost to keep fighting and not give up. It reminded me who is looking out for me and to trust in the things to come. It is one of the most beautiful moments of my life. I still watch the video in complete amazement of it myself. I needed encouragement and it was given to me. πŸ¦‹

jimeka profile image
jimeka in reply to Allen5280

Is there any way you can superimpose your harmonica playing in the back ground of your butterfly moment. It would be great to be able to share your gift of self taught harmonica with the incredible experience with the butterfly. Just a thought πŸ€” πŸ¦‹

Allen5280 profile image
Allen5280 in reply to jimeka

jimeka, I'm not sure how to do that. I'm going to have to look into it! 😎

carolek572 profile image
carolek572CommunityAmbassador

Allen,

You are an inspiration, as is jimeka and many others in this forum! We are all coping with β€˜ms’ in our own ways, and it is the way that we approach this β€˜ms’ interesting and that gives me hope. I can deal with that β€˜ms’ with the help of my friends.

Stay Strong,

Carole :-D

Allen5280 profile image
Allen5280 in reply to carolek572

I'm certain that is a two way street for us all. Life sure did suck A LOT more before I found the Love and TRUE compassion here amongst our CNSC (central nervous system challenged) family! (Yes, i did just make that up. Someone may have said it before, if so I apologize in advance and will correct myself. I did attempt a google search and nothing came up other than the Canada Nuclear program). I say it out of an attempt to make fun of my MonSter! One of the things I find,is if I can poke fun at it, I feel better even if only momentarily.

carolek572 profile image
carolek572CommunityAmbassador

Stay Strong and Keep Smiling :-D

Allen5280 profile image
Allen5280 in reply to carolek572

πŸ˜ƒπŸ˜„πŸ˜πŸ˜€πŸ˜‰ That reminds me of a pin on my phone. It may be from a post someone did. (With a big smiley face) I don't smile because I'm NOT in pain. I smile because im trying to live with pain! πŸ˜†πŸ˜…πŸ˜„πŸ˜ƒ

carolek572 profile image
carolek572CommunityAmbassador in reply to Allen5280

Exactly

jimeka profile image
jimeka in reply to Allen5280

So true. 😊

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Dude, your just old! πŸ˜’

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Jesmcd2

πŸ€£πŸ˜‚ sry couldn't resist!🀣 Seriously you did to much, give yourself a break! And put your feet up! Maybe that will help! Or soak them in Epsom salts? Idk just feel better soon! πŸ€—πŸŒ 

JπŸŒ πŸŽƒ

Allen5280 profile image
Allen5280 in reply to Jesmcd2

I couldn't resist either!πŸ˜‹

Allen5280 profile image
Allen5280 in reply to Allen5280

For the record, and to make sure it came across, yes that's a givin' the "razzberries" smiley!πŸ€—

Allen5280 profile image
Allen5280 in reply to Jesmcd2

No πŸ’© Einstein! AND The Humanity Award πŸ† for 2018 goes to Jesmcd2!!! πŸ‘ Oh wait that might be the humility! πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£

jimeka profile image
jimeka in reply to Allen5280

πŸ‘ πŸ‘‹

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Allen5280

πŸ€£πŸ˜‚πŸ€£ hope you feel better today Allen5280 an it's not my fault!πŸ˜‚πŸ€£ My Dr told me I was getting old πŸ˜’ I almost told him where to stick it! πŸ˜‚πŸ˜‚πŸ€—πŸ’•

JπŸŒ πŸŽƒ

Allen5280 profile image
Allen5280 in reply to Jesmcd2

😁 oh I know you were just teasing, I do think that now that you mention it, I think I remember you mentioning that before. I was in no way ready to tell ya where to stick it, I kinda miss the occasional ribbing from time to time. I was just tossing a little back, if I didn't you might start thinking I don't like ya! I would!

πŸ€—πŸ’–πŸ€—

LOL! 😍Allen, Many Prayers to Adonai for ya! Get some rest & Hemp cream sure helps my spacisities in leg & feet.πŸ˜ƒπŸ‘ Sorry that you have to go through all this but u R strong inn fighting this M.onSterrotist!πŸ’ͺπŸ‘‹ Blessings to ya!πŸ™---JazzπŸŒΉπŸ’œ

Thank you Jazzihorsecat, blessings back to ya!! πŸ›

oh man I hate to hear that you're going through that! and sorry to hear about your water woes. I didn't realize you were in a low area. thank goodness your RV stayed dry!

Allen5280 profile image
Allen5280 in reply to oklaguy

oklaguy, yeah I'm in a bit of a low lying area. The creek is a pretty good distance away but that was A LOT of rain!! Well, now that I think on it, not far behind where I am is where they found the 8 year old Davidson boy that was caught in the storm in June of 2016.

Sorry Allen5280 , hope it stops soon.

Allen5280 profile image
Allen5280 in reply to Morllyn

Thank you Morllyn

Damn that sounds excruciating Allen! Hope the meds give you some relief.

Allen5280 profile image
Allen5280 in reply to cheshcat

I am ok in the evenings for the most part. I can take all my medications once I'm all settled in for the day. I think it may be time to call my Neuro about my muscle relaxers possibly becoming ineffective again!

cheshcat profile image
cheshcat in reply to Allen5280

Good idea! My last flare left me with a muscle spasm only around my right side of my rib cage. And I thought the calf spasms hurt! I hope you find some relief soon!

Allen5280 profile image
Allen5280 in reply to cheshcat

Thank you cheshcat

Sounds like I need to pray harder. I’m sorry for the pain you’re having. Let us know how you’re doing and if you find something that helps.,

Allen5280 profile image
Allen5280 in reply to greaterexp

Thank you greaterexp

Really hope u feel better soon Allen5280 foot pain is the pits xxx 😠😠😠😠😠😠

Allen5280 profile image
Allen5280 in reply to janetb1968

janetb1968, I agree foot pain is difficult. It manages do disrupt any accomplishments until it lets up. Come to think on it it was the crown two of the mythological character Achilles... That would be the proverbial Achilles heel

Allen, can you do some stretching and gentle movement before getting out of bed? Hope you feel better 🌈

Allen5280 profile image
Allen5280 in reply to erash

I do some but maybe not enough? I will try it, thanks erash

Sorry to hear that. Yes, getting up in the morning can be really challenging. I just got a walker for navigating around home, and it helps in the morning a lot. Another suggestion - is your bed low enough and close to the ground?

Allen5280 profile image
Allen5280 in reply to IFwczs

My bed is at a fixed height. I am what they call a full timer in the RV living world. My bed is actually I in the upper part of my travel trailer and it's one of my four slide outs. It has the hydrolics and track in closed underneath it. The mattress is so so but I have a cool gel memory foam matress topper that makes it really comfortable. When im sitting on the edge of the bed my feet are on the floor. I think anything lower would make it harder for me to get out of bed. I couldn't use a walker in my house, I do have my forearm crutches that I can get around with. Even so there is still pressure on my feet to walk with and assistive device. Well other than a scooter or wheelchair. I'm far to determined to go that route just yet. I was doing much worse a few years ago and had done some shopping and comparison on them but I'm going to fight to stay on my feet as long as I am capable of doing so. ☺

I am truly sorry you are going through this. I said that if I ever get 3 wishes: first no children go through anything till they are teenagers, second no hungry people especially kids and third find a cure for MS. There are so many more to wish for but we have to do our best and keep giving it our best. God bless you for your courage πŸ™. Hope this pain doesn’t show up every day.

Allen5280 profile image
Allen5280 in reply to Babslover

It has been fairly consistent, however was not nearly as aggravated this morning as it has been. I think I may just be "paying the piper" for pushing myself. Thank you for your prayers and God Bless you as well.

are you sure that it is only ms today and not something else as well/ Diabetes springs to mind.

It's highly unlikely due to my labs for the past 4 years have been "perfect" as described by my physicians. I've had problems with neuropathy and spasticity for a long time now. I think ive been unddrgoing treatments for the both for about 5 to 6 years now. However, your question sparked something in my neural pathways and the connection of something I had forgotten sparked! Making me think about all that's going on, what has changed made a connection. When my neuropathy was at its worst I was using a blend of essential oils on the bottoms of my feet. I thought I was all out of it. I started searching through my cabinet and there was about half a small bottle left! I rubbed it on and within a few hours the intense buring is now just numb and tingling. Oh how out of sight, out of mind can contribute to forgotten!! So one piece of the equation is already going to get better. Then I really started getting those cogs of mine turning and I have come r to realize that I've been under and unusual amount of stress from just life's challenges and empty promises of assistance from others. I know they mean well but they don't realize how much the small things make a huge impact on me. I'm going to have to work on that and I think with a little time and rest it will all settle down. Just a complicated chin of events have sent my symptoms into an inferno I have not experienced in quite some time. Thank you Royce for getting those thoughts turning. I think I may need to make a checklist for when stuff starts to hit the fan!

Diet - am I doing it

Blood Pressure - did I take meds

Anxiety - again meds? What's the trigger?

Spasms - meds?

Stress - am I ignoring it?

Symptoms - are they new or compounded?

Etc....

I forget stuff and when I realize it I start beating myself up cause I used to have the memory of an elephant!

Glad I helped a little, that is all we need sometimes, just a little help. be Well mate.

Sounds like my feet times a thousand, and I am so sorry! I hope your new symptom is a warning and that it doesn’t stick.

Allen5280 profile image
Allen5280 in reply to kdali

Think I'm on the right path now, I had forgotten about my essential oils. 😨

kdali profile image
kdali in reply to Allen5280

What do you use?!

Allen5280 profile image
Allen5280 in reply to kdali

I'm not certain. My former therapist makes it for me. I asked a long time ago and she didn't answer I think because she wants to do it for me. She does not charge me very much at all so I never really pushed the issue and for about 4oz bottle with a roller cap to dispense it (like the roll on deodorant but smaller) it's 7.00 and that lasts me quite awhile. If I were to guess, i have been testing the different smells (which I'm quite good at being a very good cook) if I have to try one to start I settled on this one I found

Essential Oil For Neuropathy Uses

2 drops of Peppermint Oil.

2 drops of Eucalyptus Oil.

2 drops of Frankincense Oil.

2 drops of Rosemary Oil.

2 drops of Lavender Oil.

1 Ounce of Carrier Oil - Fractionated Coconut Oil.

I have also decided that I may choose to include Canibis oil once our State gets all their ducks in a row with our new medical law.

There are several I have found online but I sniffed and sniffed for awhile trying to figure it out in case it was no longer available to me. I may try and ask again and see what she has to say

kdali profile image
kdali in reply to Allen5280

Thank you so much! πŸŽ‰

Allen5280 profile image
Allen5280 in reply to kdali

I just rub it on the bottoms of my feet once in the morning and then again before bedtime. I've been out of the habbits for quite awhile and... spoof... It left my thoughts. I think about how long it's been bothering me and feel... duhhhh... lol

Allen5280,

That sounds horrible. I hope it gets easier for you.

I will say a prayer for you to help.

Best Regards,

Leslie

Allen5280 profile image
Allen5280 in reply to lbenmaor

Thank you Leslie, I think it's going to get better here pretty quickly I had forgotten my essential foot oils, it's been a while since I needed them

You're Welcome!

thanks for sharing your life in print. We're here for you and I can relate since the most pain I have are in my feet. It never goes away. I hope your foot oil works again for you.

I use Gabapentin and Baclofin and keeps my feet tolerable. Wishing you the best

I appreciate that very much Terry. I'm in a bit of a quiet mode due the data restrictions on my phone tablet. I get email notifications but when I get past my limit it slows my connection way down and limits my posts and replies. When coupled with my issues it's a wonder I even still have a tablet in one piece! Well that and my aggravation for my own issues with writing. It's bad enough that I will write, rewrite, delete start over several times... lol then sometimes I get so frustrated I say to myself, ok it's done just click reply. Forget the mistakes and other times I will go back and read my replies later to fix some of my errors if I figure them out. Being, (I had to throw that in there thank you for pointing that out or I would still be doing it) To be dyslexic is frustrating enough in its own, throw the frustrations of MS on top of it with the lack of energy and short attention span due to distractions of my environment and pain sometimes writing stuff takes me awhile. I want you to indeerstand I don't intentionally take a long time to respond it just takes a bit sometimes. πŸ™‚

You may also like...