Flare up or not?

[loveJlaws]

For the past 2 1/2 weeks I have been having severe spasms around my SI joints and hips. So severe that I am able to walk without the use of a walker to hold me up. It was starting to get better, then my sciatic nerve decided to cause problems. My right foot feels like it has been shot up with Novocain. As of yesterday, the left side of my jaw has been in pain too.

I guess what I want to know is, is this a flare up?

[jmartin0424]

Hi

I'm relatively new to MS, so I'm not 100% sure if this is a flare up or not. I would certainly call my Neurologist, if this were going on with me, and see what he/she thinks. I was told that any time there was a change at all, to call the office.

Have you been documenting the changes in a journal or something? It's always good to see the progression written down, especially since we have so many things happen throughout every day.

Sorry I wasn't more help! Hope you get this worked out soon! I hope it's not a flare up and just...well, that yucky nerve pain we go thru sometimes. Please keep me updated, I will be sending good thoughts your way!

[dalechilders51]

If this was happening to me over 2.5 weeks I would assume it is a flare and call the neurologist to let them know. Dale

[MSer102]

The definition of a flare is the onset of new symptoms or the worsening of old symptoms that lasts at least 24 hours. Some doctors think the new or worsening symptoms need to last for 48 hours to call it a flare. So if the spasms are new or worse than they used to be then it could be a flare. Best to call your neuro and let him/her decide what it is and what to do. Don't wait too long because if you want to treat with steroids, the longer you wait the less they help.

[BigA]

I think the rule we get from doctors about 24 hours and new or worsening symptoms is not clear at all. It's also confusing to understand whether we actually need steroids - we don't actually. It's like a very serious version of taking an aspirin for a headache - it will go away anyway. Steroids make you get better faster, but not any better than you would be after 6 months. So you may or may not choose to get steroids.

Here's a fantastic chart made by an MS clinic in Seattle which does a good job at explaining when to do. I'd like to add: When in doubt, call your clinic. The nurse has usually experienced it all and don't worry about wasting someone's time, especially since a phone call is the simplest thing.

However, if you want to understand it better or yourself:

https://www.virginiamason.org/workfi...acerbation.pdf

[HellsBells1]

IMHO, although steroids come with a variety of negative side effects (among many other meds these days, including DMDs), if sx are painful, or if they are impacting your life, and the sx are caused by inflammation, then why not remove the inflammation quickly with steroids, rather than waiting what could be months for the inflammation to stop on its own.

Non-MS related story - I have plantar fasciitis in my right foot, which causes excruciating pain when I walk, and I would be on my feet walking for 8 hours/day. Suffered in excess of a year while trying orthotics, and OTC NSAIDS, etc. but the pain NEVER went away. Got a shot of cortisone (steroids) in my foot, and BAM, pain GONE! Thank you.

Why suffer when we don't have to, and why would docs make us suffer just because they don't have a definitive dx, when they know that the sx is caused from inflammation that they can eliminate with steroids.

If I have a sore throat, I don't care if it's caused from a cold, a scratch, mono, strep, etc. I'm going to take something to make the pain go away, while I wait to find out what the cause is and what the proper treatment would be for the cause.

[BigA]

Every single dose of any medicine requires a kind of cost/benefit analysis. The costs can be very small individually or serious long term. The doctor and patient need to weigh these risks vs benefits each time.

[HellsBells1]

Agreed! You are correct.

[Thinkimjob]

Every time I've had steroids, they work like a charm, but I get the most horrendous dose of oral thrush.

It is quite disgusting, really. I swear I can see the little swine clinging to my taste bids and waving hello en masse. Like a miniature mushroom farm in your mouth. Ugh.

It only goes away when I finish the steroids, no matter how much fungicide I take. In desperation, I've even gargled with white vinegar (ooh that's good for your teeth, not).

It does take your mind off MS, anyway.

Like everything with this sod of a disease, it's swings and roundabouts.

[loveJlaws]

Thanks for all the advice. I am now convinced that this is a flare up, my hands have been tingling the past few days as well. Guess it's time to call the neuro. I have already done one round of steroids from my PCP, but I suppose I need to get my neuro in the loop.