MS and things to avoid....: As many of us... - My MSAA Community

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MS and things to avoid....

Fancy1959 profile image
Fancy1959
โ€ข25 Replies

As many of us know who have MS for length of time it seems like each and every year our things to avoid list grows longer. Offhand for those newbies joining our chat room I thought together we could compile a list so they might know what to expect before it happens. Or if they're currently experiencing any of these negative impacts they can take steps to lessen their importance in their life before or even, in some cases rid their life of the item before it has a negative effect on their MS.

1. Stress, made the number one spot in this post. Prolonged stress or excessive stress can lead to exacerbations with MS. Try to avoid it at all costs. It drove me from my career because I could see my MS getting worse and worse due to the continual bombardment of stress that I was under. I decided I was not going to let work kill me so I left and I've never regretted it at all.

2. Over exertion make the number two spot. Doing too much physically without the rest required in between can also cause your MS symptoms to flare. If your balance is an issue when you get tired it becomes harder and harder to pick up your feet and you fall quicker. My bowel and bladder control it's a lot sketchier when I'm extremely tired. It also causes muscle groups to just give up The Ghost and quit working. My calf leg and leg muscles and ankles sometimes just turn to rubber if I do too much. As an example here was when I was fairly newly diagnosed we went horseback riding and after coming back to the camp about two-and-a-half hours later it wwas like i had no leg muscles to hold me up . If it wasn't for the horse being good I would have been on the ground. I kept grabbing hold of the saddle and the stirrup and pulling myself back up. It took several tries to even get my legs partially under me and then my ankle rolledl completely over. When my family first saw me they thought the horse had stepped on me and broke my ankle. I had explain to them it wasn't the horse that caused my ankle to roll over but it was that the horse that was keeping me standing up right at that moment as I clung to his main and neck as I was trying to move forward to find assistance. It was an extremely scary experience and one I wanted to share with everyone before you overexert yourself and find yourself with no muscles and perhaps no legs or arms to use.

3. Walking over rough ground in strange areas with no assistance equipment or person to give you an arm. You don't have balance problems but even without them you need to be careful when walking in strange places without assistance equipment. You just never know what you might find as far as big holes or in the winter spots of ice so to make sure we don't fall and break bones is vitally important as well.

4. Trying to do as much in a day as we used to do pre-MS. Make another list of the items you wish to accomplish that day and then cut the list in half or even less depending on how you feel or your stage of MS you are currently operating under. Don't try to do as much now with that you have MS as you did before you were diagnosed with MS.

5. Do not self-medicate or take herbal supplements without checking with your neurologist first. Many of the therapies we find ourself on with MS are complicated compounds and some can interact negatively and cause problems, even over-the-counter meds and supplements. Better off 6being safe than sorry so always check with your primary doctor or neurologist first before adding or changing any meds in your MS wmedicine profile.

6. Lack of sleep. Lack of sleep can affect so many areas of our body and even allow are immune system to decline. If you find yourself not sleeping well since you're MS has been diagnosed, you are not alone. And don't purchase sleep aid over the counter but check with your primary doctor or neurologist and let them handle it professionally. What they prescribe for you will have more strength and potency and will work better for you without interacting negatively with your MS.

7. If you are not content with your current neurologist find one can talk to and who will listen and explain things to you in language and ways you understand. If your pain levels are high and if you're having trouble doing day to day tasks becase your pain is so high it is possible that your MS care provider is unacceptable and you need to find one who will take care of your needs. You need to be constantly brought up to date on any new therapies being approved. If you currently are satisfied with your therapy and it is keeping your MS in check in your satisfied with your current MS prognosis then you can not worry about checking on other, newer therapies. if your current therapy isn't improving your MS state and you need to have a neurologist who will take the time to explain them to you and go over them with you. There are a lot of good neurologist out there. Ask your primary care physician to recommend a good neurologist in your area if you're not content with yours. And if that doesn't help check with the National MS Society and they will find the National MS Oe5ffice in your area who can then recommend neurologist within your region that you might be interested in talking to. The phone number for the national MS Society is: 1 800 fight MS.

8. Do not put up with limited, none, or very negative support from your core group. If your spouse, significant other, or other family members are not there for you, find support somewhere else. If you don't have any at home, if your partner has left you or isn't there for you when you need them, find support elsewhere like this chat room.

Remember that MS does not make you less worthy as an individual. You need to find place to go where you are reminded of that constantly. Come join our extended family here. You will find a safe place to voice concerns, ask questions, and to be surrounded by those who truly understand what it's like and what you go through when you have MS

9. Temperature extremes can cause both exacerbations and extreme pain for many MS patients. Many patients with MS has very low tolerance to high temperatures. This can come in the form of fevers from infections or simply being out on extremely hot and humid days for too long. Any type of swelling with the body extreme temperatures really makes MS patients ill. No matter the cost website internal swelling is to hydrate hydrate hydrate and if you are out in extreme temperatures get out of this and understand as quickly as possible. Now as far as extreme heat also you have to remember this soaking in extremely warm tubs, taking long hot showers, and don't forget that hot tubs are no longer our friends as patients with MS.

Now to come to the cold temperatures in how they affect MS patients. As an MS patient you need to be extremely careful in the extreme cold. Keep your hands and your feet as protected as you possibly can. I suggest every MS patient look up an article and read it on Rinaldi's Syndrome. I suffer from it and I hit it hit my hands once. And I can tell you I for three children in natural childbirth labor and nothing compared to the pain that Rinaldi's syndrome attacked my hands with. Your hands will turn very pale or blue and tingling it to extreme discomfort and then all of the sudden it will feel as if 1,000 spikes are being hammered into each hand simultaneously. I wound up on the floor in the fetal position with my hands between my legs crying or wailing like a child and it lasted at least 10 minutes or more. Don't tempt fate do not go outside with your hands and feet unprotected and read an article on Rinaldi's Syndrome. My hands are even uncomfortable for when I have to put them in extremely cold water for any length of time or have to dig around in the freezer looking for a hidden item.

10. If you have any type of infections MS can sometime hide their symptoms, as in you might not feel the pain associated with it.

11. Associated with the depression but not directly linked to it is mood swings. Because of the nature of MS with your good days and bad days your moods can swing dramatically. This can prove to be especially difficult for caregivers and loved ones around the patient to deal with.

12. Although the following information are not things to avoid they are excellent points to take into consideration when dealing with your MS.

MS affects each and every person who has it differently. No two people who have MS walk the same path with MS. Although many of our paths are extremely similar we walk them at different paces and we face many of the same detours but they are at different places along our paths. So what helps you might not help the next person with MS and vice versa. The best thing to do is to watch and learn what others do. Try to see what works for you and incorporate that into your daily life and what doesn't work simply discard.

Accept help graciously. Don't think that by accepting help you are giving up your Independence. Your safety is worth much more than your Independence. So don't turn down help especially when need it just to make a point that you can still do it on your own.

A positive attitude is very essential when dealing with MS. To think that you can beat this monster is to be able to find a way to beat this monster. Never give up.

Read read read. Find any and all information you can find on this as it relates to you and read it. Information is your friend when dealing with MS. But realized there is a lot of misinformation out there. So when you read remember to sort out the advice that seems to be totally out of place. Do not discard it but research is farther to make sure it's not worthy of spending more time on.

Do not live your life halfway or live it in fear. Follow and live your dreams. Do everything just modify how you do it in order to keep yourself safe. if MS manages to make fear change your dreams and stop you from doing what your heart desires, MS wins. Don't let that happen.

Remember that MS does not make you less worthy as an individual. You need to find a place to go where you are reminded of that constantly. Come join our extended family here. You will find a safe place to voice concerns, ask questions, and to be surrounded by those who truly understand what it's like and what you go through when you have MS.

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Fancy1959 profile image
Fancy1959
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johnMSAA profile image
johnMSAAPartner

Excellent post and start to the list, Fancy1959 ! I will second this from your post:

"Come join our extended family here. You will find a safe place to voice concerns, ask questions, and to be surrounded by those who truly understand what it's like and what you go through when you have MS."

- John, MSAA

Fancy1959 profile image
Fancy1959โ€ข in reply tojohnMSAA

Thank you JohnMSAA. It's Fancy1959. I've already had some excellent additional points added to this post and I only made it a couple hours ago. My hope is that it will help the new members of this chat room who have just recently been diagnosed with this terrible monster we call MS, avoid some of the pitfalls we have fallen into. If it helps just one newly diagnosed person and keep them from falling into a deep pit that MS can scatter across our life's path, then it is a very successful post to me. Fancy.

Fancy1959 profile image
Fancy1959โ€ข in reply toFancy1959

John, even more exciting I just spoke to a new member that is new to the world of a mess. She is listed under T1 - of - F1. Her comment to me was that she thanked me because she didn't know about any of these pitfalls to watch out for and she was certain that they would help her along the way. I felt so good at that moment. I told her to also read the other replies because other members were making some good additional points that she could learn from. I plan to once the post has run its course to make it through a listing of the pitfalls to avoid for new members with MS and make it some type of posts with every point that the entire chat room comes up with. I think it will be a very worthy piece for new members to familiarize themself with because sometimes doctors especially those who actually don't have MS don't cover so much that can happen to you. And when it happens and no one has warned you about it comma oh my gosh it is scary. Fancy

WAshingtongirl profile image
WAshingtongirl

Excellent, Fancy1959 ! You started a GREAT list there. I would add:

1. Heat. Not everyone with MS is heat sensitive, but heat/humidity does me in and, according to my neuro, set off one of the worst exacerbations I've experienced.

2. UTIs can be the result of a relapse or even cause one. It's probably the inflammation and our antibodies going haywire as they do with MS. See your doctor and have a culture/urinalysis done asap so you can start treatment right away. By the way, my neuro ALWAYS checked to make sure I didn't have a bladder infection prior to starting steroids.

Fancy1959 profile image
Fancy1959โ€ข in reply toWAshingtongirl

Awesome points Tutu and 2 very worthy points to be added to the list! Thank you I knew I could count on everybody to fill in my gaps. Fancy1959

CalfeeChick profile image
CalfeeChickCommunityAmbassador

Excellent post Ms. Fancy! We walk/share so much. Your post is a guideline of what to expect.. Thank you for great post with much thought and energy put into it.

Fancy1959 profile image
Fancy1959โ€ข in reply toCalfeeChick

Why thank you. I've got such a teaching background I can't help myself sometimes. My whole goal was just to assist the newly diagnosed. If it helps one I'll be overjoyed and smiling from ear-to-ear!

jimeka profile image
jimeka

Well done Fancy, it was very informative reading. I can only echo what you have said, also your emotions are all over the place, you tend or at least I do, to take offence easily. I agree with Tutu, heat is terrible at starting the ms off, even a nice hot bath or shower can set the feeling of being worn out,, even though you enjoy being in a nice warm shower. Hope you are feeling better and have you heard anything of Kelly? Blessings Jimeka

Fancy1959 profile image
Fancy1959โ€ข in reply tojimeka

Jimeka, you need to go ahead and actually itemize your points about taking the over hot bath or getting in a hot tub as one because we often don't think of that. And you also need to make a point of our emotions being all over the place because we're dealing with so much when we were first diagnosed. That way if you let people know that are not the only one maybe they won't take things so personal and it'll help them in the long run.

And no I've yet to hear from them or 55 / Kelly and I'm very worried about her. If you hear anything please let me know. Thank you Fancy1959

jimeka profile image
jimekaโ€ข in reply toFancy1959

1 Hot showers/baths can make you feel exhausted

2 The hot sun may be good for vitamin D but too much of it gives you fatigue

3 Emotions are all over the place. Little things are blown out of proportion.

Tripping up, continuously even though you tell your brain to pick your foot up, it doesn't, foot drop is normal for ms.

5 Forgetting where you put your glasses only to find they are on top of your head.

I am going to stop there Fancy, I am going to let someone else have a turn, as I don't want to have all the fun to myself, lol, blessings Jimeka

Pbailz profile image
Pbailzโ€ข in reply tojimeka

Oh my goodness I'm so glad that you put forgetting where your glasses are!!! even though I don't wear glasses... I forget where I put my keys, or my water & yesterday I found the remote in my purse!!! Oh the stress of constantly "losing" things aka mis placing them!!!

Bygonelines profile image
Bygonelinesโ€ข in reply toFancy1959

I just posted a fairly long update on Kelly over here...

healthunlocked.com/mymsaa/p...

T1-of-F1 profile image
T1-of-F1

Thank you for sharing. You hit every issue unaware of so far.

Fancy1959 profile image
Fancy1959โ€ข in reply toT1-of-F1

T1-of-F1 hello, I'm Fancy1959 and I believe you are new and I would officially like to welcome into this wonderful chat room. You have found a safe place to come ask questions post concerns and be surrounded by those who truly understand where you were at and where you are going because we walk in the same shoes you do. This is a safe place where you will be surrounded by kind considerate and compassionate people that will give you a lot of positive feedback to help you understand you're not the only one fighting this terrible monster we call MS! Be sure and read the replies because they're already three or four things that I have missed on the list that will benefit you also. After all the replies are in I might create a new posting listing everyone's complete list to help newcomers to the world of MS avoid the pitfalls hopefully before they fall into them. If you need anything at all just make a post to me and I'll get back to you as soon as I can. One thing I would like you to remember is that you know part of our extended family and as such we will do everything in our power to take care of our own. I'd like you to also remember that together we are stronger! I look forward to talking to you again soon and until then take care of yourself. Fancy

WAshingtongirl profile image
WAshingtongirl

Another thing to add:

1. Read (learn) all you can about MS, but don't believe everything you read. Make sure your sources are reliable and updated.

2. Remember MS affects everyone differently. Don't assume that everything you hear or read about others will be the same for you. Keep "plan for the worst but hope for the best" in the back of your mind. Don't live your life in fear. And that leads me to the next:

3. A positive attitude helps emotionally and physically.

4. Live your life. Do things while you are able. No one knows the future (even those without MS). Today is a gift. Enjoy it.

5. Accept help graciously. Remember how great it feels to help someone else out. Don't rob someone else the blessing of helping you.

WAshingtongirl profile image
WAshingtongirl

Leave it to me to mess up on an assignment. Sorry, Fancy1959 . (And yes, erash , I hear that voice telling me not to be so frustrated with myself ๐Ÿ˜ฌ). Let me re-list the above as things to avoid:

1. Misinformation about MS

2. Living your life in fear

3. A negative attitude (seek counseling/help without shame or embarrassment if your down days outnumber your good ones)

4. Putting off your dreams

5. Turning down help when it is offered

Thanks for being so patient with me, friends... Where are those marbles I was hoping to get for Christmas? ๐Ÿ˜‰

Fancy1959 profile image
Fancy1959โ€ข in reply toWAshingtongirl

Well done again Tutu. I love your numbers 2,4, and 5 especially! Wow keep up the good work. I can use all the help i can get! Fancy

Good_enough profile image
Good_enough

Lovely and concise, thanks

agapepilgrim profile image
agapepilgrim

Fancy1959 well said. Need to print and put on frig !!!!!

Fancy1959 profile image
Fancy1959โ€ข in reply toagapepilgrim

Thank-you Mam! If I get permission from the MS Walk here locally in April I would like to set up a booth and hand out flyers about the MSAA chat room. Would you be willing to help me man the booth as I already have some obligations with the National MS Society for the walk. I was in charge of the vendors last year and I probably will be again this year. Think about it. You have time to consider since it's not until about like April 4th. Just let me know at your convenience. Thanks

agapepilgrim profile image
agapepilgrimโ€ข in reply toFancy1959

Fancy1959 yes ma'am sign me up!! If it's a bad day for me my husband is a great helper (that's his gift) and he will be there if I sit in a lounge chair all day with right arm tremors! Lol. Love to get involved! This sight and 2 others have kept me sane the past 6 months!!

erash profile image
erash

Fancy1959 and all above contributors yes, yes, yes ๐Ÿ˜Š

rjoneslaw profile image
rjoneslaw

As always you have great points that are very helpful. ๐Ÿ˜Š

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Awesome post Fancy1959 ! I must have been out sick this day. cause lm just now seeing itโ˜บ

Jes๐ŸŒ 

Stepinup profile image
Stepinup

Thank you for the post Fancy1959!

On the days I feel like dancing around the room...lol...I do more then I should and pay for it the next day.

I'm glad I can come here and everyone just seems to get what I'm going through...love it!

Steph

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