Feeling good for a short while?

[Douglas]

This is hard to explain but sometimes for a brief moment maybe for five minutes I get this overwhelming feeling like a gust of freshness has blew over me and I feel great. My head is clear and everything feels so sharp around me and I feel so alive and alert. Then it is gone as suddenly as it arrived. If I could harness that feeling of pure energy my life would be so much better. It's gone as soon as it arrived and then it's back to feeling like I have a wall around my mind. It's these moments when you realise how bad Sjogrens isn and what it is doing to you. You actually get used to the lethargy and clouded mind and we just soldier on with it.

Does anyone else experience this.

[Carolina]

Yes, Douglas, and with the right meds I have that feeling a good deal of the time.

It is the inflammation that Sjogren's causes that clouds your mind, give you depression, pain, and fatigue.

I take several things that help, but I have had to work out my 'combination' and it wouldn't necessarily be right for anyone else.

I do think that Plaquenil/Methotrexate/the new biologicals can help if you have autoantibodies causing the problem and you need to tamp down your Immune System.

I don't use that method, because I don't actually have autoantibodies causing my inflammation, instead my Immune System uses something else.  AND my Immune System is actually weak, deficient.

So my way of feeling better:

1.  LDM (low dose Medrol, 2 mg medrol every day for two weeks, then every other day for two weeks, and so on)  Medrol is like Prednisone only slightly stronger.  Medrol is a steroidal anti-inflammatory

2.  Cymbalta 60 mg, an antidepressant that is also on label for pain.

3.  Gabapentin, (24mg day) an anti-seizure medication that is used for the pain for neuropathy.

4.  Mild exercise in warm water makes me feel wonderful.

5.  Relaxation and meditation are also amazing.

I take a lot of supplements that you will hear about on our forum, and I won't go into them unless you're interested.

In addition to feeling much better than I did for most of the past 10 years, I also have, as we all do moments of euphoria, that break through when the world really seems in tune for me.  Like being 'in the zone' I guess.

Those moments are fleeting of course, and never occur when brain fog, depression, pain, fatigue and general misery cloud my mind.

Hugs,  Elaine

[Douglas]

Thanks for reply.

This happens without any medications although I am currently almost 7 weeks into the Hydroxychoroquine (Plaquenil) which is making my life heck. The constant itching is becoming too much. I got a surprise appointment to see an occupational therapist next week and I will bring this to their attention. Nothing stops the itching at all.

[Sharon]

Yes, happens to me too Douglas.
If the Plaquenil is causing you itching you may be allergic to it.
It caused me terrible neuropathy and I had to stop it.
It has a half-life of 50 days so side effects may take awhile to completely disappear.

[Douglas]

Thanks, I will bring this up. Hopefully this person I am seeing will have authority to change my medication.

[irish]

Been there, done that. A couple of years ago I had about 3-4 hours one afternoon that I perked up and felt to good and had energy. I did laundry, up and down stairs, scrubbed floor, all that good stuff. It felt so good to get it done. And then it was gone. The next couple of days were total failures as I could hardly move and was so fatigued. My hubby told me that I should have known it would happen. Yes, I did know that, but I wanted to live big while I could. Irish

[Carolina]

Oh, Irish ANGEL, your idea of living BIG is doing laundry, scrubbing floors and going up and down stairs?

I so identify.  When I had the cortisone injection in my back for my sciatica, the pain was GONE and I was was using the heavy vacuum cleaner, and cleaning like mad.  The relief lasted for exactly 12 days, and then the excruciating pain was back. This was at the end of August, and I had surgery on my back in October which fixed then problem.

My idea of living big is cleaning my house, just like yours.  We're not out clubbing and singing Karaoke, are we?  We just want to do ordinary things.

Mostly I'm just stuck in my chair now, wearing braces that help me walk a little bit.

Hugs,  Elaine

[Steve]

Yes , it happens to me also . I've learned to try and manage the good feelings and just enjoy them because going overboard you will just pay for it the next couple of days .

[Douglas]

Last few days I have been really tired and legs are so heavy and I'm feeling sick. I get the sick feeling from time to time.

I was at appointment and I was told to stop taking my medication because of the itchiness. I will have to wait till near the end of April to start another round of pills as they want to see if itching goes away first.

I was googling pills and I will make sure they don't prescribe me the ones that make your hair fall out in clumps. It started with M...