I was diagnosed with the relapsing/remitting form of MS in 1993. I am happy to share my knowledge for these and other related health issues.
Whenever a change of season approaches, I notice I have gotten into the habit of checking specific MS hubs I have published. The reason is because with a every new season, comes the increased likelihood of a MS relapse or flare-up.
I have a few key hubs that have accumulated quite a few reads, given the niche subject matter. I know what the average readership per day is, so when the numbers began to spike, and the season is changing, I know it is not good news for people with MS.
I thought I would deliver a written pep-talk for anyone who finds they are in a flare and are considering 3 or 5 day IV Solu-medrol treatment, or have already begun a course of treatment.
The inconvenience and aggravation that results when a seasonal flare occurs is hard to explain. Allergy sufferers get a glimpse of the uncontrollable nature of a flare.. They must suffer unexpected problems which can change on any given day, based on the pollen count.
Outdoor plans may have to be postponed or cancelled all together. Much the same with a seasonal flare. No matter what you had planned, if the flare is severe enough you are forced to cancel or postpone and then wait it out, hoping to salvage some of the summer months. The unknowing I think is the hardest to endure aside from the flare itself.
Experiences of Others
- Multiple Sclerosis (MS) Discussions at DailyStrength: DO SEASON CHANGES AFFECT YOU?
This links to a support site in which the question of seasonal changes is discussed. People with MS are not alone in this seasonal shift.
Newly Diagnosed and New to Steroids
Whether brand spanking new to the wonderful world of MS, or a seasoned veteran, having to go the steroid route, while necessary, is always difficult and challenging. It is also usually a method of last resort to quiet down the activity involved in our body’s all out attack on our central nervous system.
Craving a release from systemic disturbances while willingly accepting high dosages of steroids, is at once comforting and bone chilling. It both defines and defies logic.
We know we are suffering, we know our bodies need assistance; we know we have tried waiting out the flare-up and have been unsuccessful in our attempts. Now we know something more is required.
If this is the first time, it can be especially nerve-wrecking. All the unknowns involved with reacting to the steroids and then waiting for the steroids to work is enough to drive even the sanest among us batty at times.
Reinforcements Have Arrived!
The following are bits of advice many of us already know, but sometimes just need to “hear” someone say in order to provide fortitude for what will be a rough ride.
You need to do this. Remember this is not an easy choice. You are suffering with loss of mobility or loss of a much needed limb, or eyesight, or other important function. While steroids are not a cure, you are taking them to lessen the time you spend incapacitated. Doing something to regain function is worth what you will endure.
This probably is not going to help me. Hear me when I say that is a normal and natural fear. Putting yourself through a steroid cycle and having no improvement is hard to even consider. However this is also a manifestation of negative thinking that easily creeps in when we are very sick. The feeling of hopelessness that gets you thinking nothing makes a difference, you can’t deal with MS, and it will just keep getting worse from here, are some of the thoughts you can’t afford right now.
Remember, you will have to give the steroids enough time to work after the crash is over. If there is still no improvement there are other drugs and treatment options, so don’t fall into the trap of thinking there are no other resources if steroids aren’t helpful. Your neurologist will have other treatments for you to try.
I get so depressed when I’m on steroids. I hear you! Depression is a tough side effect to have and it can seem like you will never recover.
Your depression will end though. I have to remind myself whenever I take steroids that depression is normal and this too shall pass. Try to prepare in advance for what will come.
Have a close friend or relative remind you that the depression is a side effect and you will be back to your old self soon.
I hate gaining weight. Hey I hate it too, but I’ve come to appreciate that walking trumps weight gain every time. So try to weigh your weight gain against the obstacle you are facing with your flare-up and remember functioning to your highest capacity is the goal you wish to attain.
Avoiding the Main Trap
This is a toughie I will readily admit. You are all “juiced” up, feeling more energetic than you have in ages and you are reading that you should rest up and not do too much? Yes, you read it correctly. It is advice I stand by after trying both alternatives, doing way too much and doing (what at the time feels like) way too little.
Doing way too little is the best.
Remember the energy you feel is not indicative of your present health condition. Your body is working hard to handle the onslaught of autoimmune responses, it is working even when you think you are at rest. Therefore be very mindful of the stress and strain your system is under and allow it to get as much rest as is possible under the circumstances.
While you will be successful in accomplishing tasks you haven’t been able to do in quite some time, you are still hindering the healing that is supposed to take place when the steroids bring down the inflammation and allow the attack to arrest.
It is very possible you will not suffer the consequences of overdoing until you crash from discontinuing the steroids and/or taper.
I like to think I cut the crash time down because I have fought the urge to overdo while all ‘roided’ up. When the inactivity takes hold, I don’t have as far to drop because I didn’t do much while I was feeling overly energetic.
Sooner or later the piper must be paid. Why not set up easy to make installment payments, rather than one huge lump sum payment due upon demand.
My Personal Experience
I am one of those people with MS who previously relapsed in the same two month span for at least 10 years in a row.
Always November or October I would have a massive flare. Sometimes I would get right to the end of November, the 30th day and then flare.
I kept asking anyone who would listen, "Why can't I get past a November without flaring?"
Of course there was no definitive answer, as is often the case with MS.
So, after a few years of the constant Autumn flares, I began joking about it instead. It became a contest to see how deep into the month I could go before I flared.
If I almost made it through the month I would joke with my doctors about how close I came to sneaking one past myself. More often than not though, I adjusted to the yearly steroid trek my body forced me to endure.
Suddenly A Change
Then all of a sudden the annual Autumn flares ceased happening. I couldn't believe it. My first Oct/Nov rolled around and I escaped without a flare. That is not to say I didn't flare at all. I just switched seasons and flared in April/May instead of Oct/Nov.
I still seem to be on that schedule, flaring earlier in the year as opposed to later in the summer months.
I hope this year of 2010 will show me flare-free for the first time in a couple of years. I will go with the flow either way, but there's something special about getting through an entire year without a major flare that just gets me all excited inside.
jenn on November 15, 2011:
glad to know i'm not alone in my autumn flares! seems like November is always a crazy month for me. Thankfully no problems in Summer as long as I don't overdo it.
Jen's Solitude (author) from Delaware on May 01, 2010:
Thank you for such a kind compliment neve22. I am glad you do not feel alone, MS is hard enough.
neve22 on May 01, 2010:
This article is very helpful! We need more information like this. You have a talent of writing down the "real" issues and making me personally feel not alone. Thank you!
Jen's Solitude (author) from Delaware on April 06, 2010:
Interesting questions Connie, wish I knew more about Fibro to offer an opinion. I sure hope it doesn't turn out that living in Florida will make you feel worse. Now you have me wondering if others with Fibro use solu-medrol as well?
Take care of yourself and thanks for dropping by!
Connie Smith from Tampa Bay, Florida on April 06, 2010:
It is funny how MS and fibromyalgia (or whatever I have) have so much in common, with the fatique, the flare-ups....from the beginning I noticed that I had a flare-up with the changing seasons, especially summer here in Florida when the humidity is so high. If I spend any amount of time outdoors, I will suffer for it later with severe pain in some area of my body. It is also telling that while I was in Ohio, I really didn't suffer the flare-ups like I do in Florida. Wondering if it was because I was having pretty regular Solu-Medrol shots for bronchitis (before my big attack) or if it was because, though it is humid there, just not as humid as Florida?
Jen's Solitude (author) from Delaware on April 02, 2010:
You are very welcome flona_33! Thank you for leaving your comment.
fiona_33 from UK on April 02, 2010:
Thank you for writing such a personal hub.
Jen's Solitude (author) from Delaware on April 02, 2010:
Sharing here on hubpages is very easy for me because of all the love I feel from other hubbers like you, ethel! I hope others feel they are useful. Thanks so much for your kind comment.
Ethel Smith from Kingston-Upon-Hull on April 02, 2010:
Sharing your experiences must be hard. These hubs will be so useful to other MS sufferes though
Jen's Solitude (author) from Delaware on March 21, 2010:
Good morning GarnetBird, I can so relate to your best friend as I stopped being the type of friend my closest friends were used to having as well. Too tired to even talk on the phone on have breakfast was hard on all of us. I found out my friends were true friends because they stuck with me. It appears you are a true friend too and I applaud your selflessness!
Gloria Siess from Wrightwood, California on March 20, 2010:
Three cheers for you, Jen--you and your Hubs are awesome. My bestfriend of (40) years now, gets very depressed from her steroids and she has brain leisons. This disease has stolen my closest, dearest friend away as she is too tired to really enjoy being around people. Keep up the good work!!
Jen's Solitude (author) from Delaware on March 18, 2010:
Lecie, sorry to read of your health problems. Steroids are used for many things, I'm assuming you are on oral steroids, maybe prednisone? If you google the name of the steroids and "side affects" you will usually find a list that is helpful to you. I hope your pain eases soon.
Lecie on March 18, 2010:
i had no idea that the seasons affected ms, i was just put on steroids for muscle pain. my doc has to wait for test results to come back before he can say for sure what i have. i didn't know that depression was a side effect to steroids. thanks so much for posting.
Jen's Solitude (author) from Delaware on March 17, 2010:
Sorry to read this Sandyspider especially since many people do not have to worry about a shortened life span as the result of MS. So sorry for your loss.
Sandy Mertens from Wisconsin, USA on March 17, 2010:
We have a friend who died a few months ago from MS. Nice hub.
Jen's Solitude (author) from Delaware on March 17, 2010:
fishtiger, with friends like you dropping by, it is hard not to keep a positive attitude. Any comparison to your great-grandmother is an honor to me! Thank you!
fishtiger58 from Momence, Illinois on March 17, 2010:
I really think your positive attitude helps with the MS Jen. Just like my great grandmother was the happiest woman I know. Hang in there girl. As usual great hub.
Jen's Solitude (author) from Delaware on March 16, 2010:
Hi there Paradise. I always look forward to reading your comments. Thanks so much!
Paradise7 from Upstate New York on March 16, 2010:
A terrifically helpful hub for MS sufferers. Thank you for your honesty and public spirit!