When is this going to stop?

[shel67]

I felt good (I use the term loosely) Friday and by  Saturday I began to go downhill again. Every time I feel good, maybe even this rollercoaster will settle down for a little while and I feel I might even be able to make it, I feel bad again. Symptoms will even feel "better" in some way. I'm less imbalanced, clearer head, I feel like I want to move instinctively and feel like body wants to be normal.  But by late afternoon and when I woke up this morning,  I feel like I'm getting worse again. I'm so afraid more is happening to me subtly. Now my eyes are scraring me. Off and on blurriness.

Is this the way this goes? Isn't there a leveling off at some point?

[shel67]

Good advice. Once I get this medicine thing situated hopefully I'll calm down (if med goes okay) and things can begin to settle down. If I can slow way down this thing and I'm holding out hope some of these symptoms will improve. I know there is damage but I'm hoping not all of it is and things begin to heal.

[Corriel]

Stress is certainly powerful. I can be almost 100% certain that in the year preceding my "big bang" as I like to call it that stress absolutely contributed to it.

It was a long year and the preceding years weren't great stress-wise either in hindsight and my body just couldn't take it anymore.

That first attack lasted 3-4 months and came back less than 60 days after it finished. Then I had a third about 3-4 months after my diagnosis. Again, stress playing a large part.

I recommend counseling (which I think most of us do after a diagnosis), and plugging into support groups/networks where you can.

One thing that helped me was that I tried to de-personalize what was happening to my body. Call it denial or whatever but I would wake up each day, make a mental note of anything that felt "off" then file it away (either mentally or in writing) as if I was making notes for a patient (that just happened to be myself).

If the symptom stayed it was recorded the next day and if it went away I would note that it went away.

It was hard to refrain from researching the heck out of each symptom (which I wanted to do more than I wanted to breathe if I'm being honest) but I made a deal with myself that if after a week I still had the same symptom then (and only then) could I add it to the list for my neuro but I also gave myself permission to do brief data collection/research just to see if there was a link to other symptoms I was experiencing (or not as the case often was).

It is hard to detach from the symptoms but by personalizing them so much they do take over and that isn't good for you or for your MS.

I used that first year to faithfully get to know and understand my version of MS. Now we can co-exist and she doesn't take over my life.

Hugs,
Corrie

[shel67]

Corrie, think that is what's happening. It's hard for me to change my reactions. I always reacted to a situation with a lot of energy. I know the past flares were after some stress event. I wonder if MS happened to me due to chronic inflammation from stress.

[Corriel]

Early after a diagnosis there is a lot of stress and if you were finishing or in the throes of a relapse when you get a diagnosis the symptoms can worsen temporarily or new ones can crop up.

I cannot stress enough how important it is to keep control of your anxiety. Is it possible that even on good days that you are so keyed up hoping things have quieted down that you inadvertently cause yourself more stress that causes more issues?

Just food for thought, the mind is powerful and with an already overloaded system it is a recipe for more trouble.

It has taken me several months for a flare up to quiet down in the past and any anxiety I had contributed to that so I now take special care to lock those feelings down if they are getting in the way of my recovery and it actually does help.

Hang in there,
Corrie

[HVAC]

There are two things in MS inflammation and nerve damage. When symptoms come and go that is inflammation. In the beginning of MS inflammation is the main culpret. If symptoms never go away that is nerve damage which in later MS.

I have a lot of nerve damage since I have had Primary Progressive MS since I was a child. My damage is not bad to deal with I have gotten used to it.

It also has to do with the location of the inflammation. My damage is in my brain so I do not have as much trouble with my legs. In the brain the nerves can find other pathways.

Alex

[supermum_ms]

It's very common for pwMS to experience a 'temporary' return or worsening of their MS issues (pseudo relapses), because they've pushed them selves to much when they are feeling good. Often the issue is because of heat (Uhthoff's phenomenon), being effected by hotter external and internal temperatures is a common MS issue.

Both situations can cause pseudo relapses with symptoms resolving after you've sufficiently rested and cooled down enough but other possible explanations to consider are fatigue, sleep deprivation and mental health, which are all common MS issues irrespective of progression or true relapses that might be factors to also consider.

Cheers..........JJ