Flaring - Vent

[SjoGirl]

Hello all,

Just need a place to vent before I blow a gasket. I have been on a long slow decline that recently accelerated and I am now in agony. My spine hurts from top to bottom, shoulders, knees, hands (also swelling at night), and toes all ache. I'm having migraines at night and oddly, nightmares too.

I have been going to PT for issues with my rotator cuff, but think he over did it last week. That led to terrible pain if I sit and laying seems almost impossible for more than a few hours.

I see my PCP this week, she's a god send (she has anklosying spondylitis so understands). I see my rheumy in mid March and asked if he could run some extra bloodwork prior to my visit, e.g., SSA, SSB, ANA, etc.

I have a Medrol pack on hand, but want so much to avoid steriods. I also have muscle relaxers and will try part of one tonight.

Thanks for listening, I know this group understands.

[finallyadx]

So very sorry to hear about your flare...I do hope you can find some relief from your symptoms soon.

Sending virtual hugs and positive thoughts.

[Carolina]

Dear SjoGirl:

My solutions to chronic pain aren't for everyone.  And some of my early solutions have had to be abandoned, while newer ones have been adopted:

1.  The newest is LDN, which stands for Low Dose Naltrexone.  I currently take 3 mg in the evening, and and experimenting with an additional 3 mg in the morning.  It is relieving my night time severe pain from severe osteoarthritis.  My knees should be replaced, but will not be replaced because my profound peripheral neuropathy makes me a very bad candidate.  Both shoulders should be replaced, and it is night time shoulder pain that is agonizing.   The LDN allows me to sleep, virtually pain free.

2. The next drug is Gabapentin, which stops the pain, itching, stabbing, sensation that my skin is on fire.   I take 3600 mg daily.

3. I currently take 2 mg of Medrol, every other day.  This allows me to tolerate my IVIG every four weeks (otherwise my Immune system goes into riot mode 48 hours after my IVIG).   I'm sure this low level of Medrol also helps with pain.

I had excellent total pain relief from Cymbalta for 6 years, but in the 7th year developed side effects that made it impossible to take any SNRI or SSRI.  So I am delighted to have found LDN.

I know we are all different, and what works for me may be the kiss of death for others. 

I also know what it is like to experience the level of pain you are in.  Ask about LDN.   It's 'newish' for treatment of chronic pain, but Naltrexone has been around forever.

Regards, Elaine

[SjoGirl]

Thanks finally dx, the support matters.

Carolina, thanks. I need to remember to ask about Naltrexone. I also plan to ask about medical marijuana, which has now been approved for certain conditions in the state that I live in.

I have Gabapentin in my tool box, I've been reluctant to use it again due to weight gain and the fact that I ended up with myclonus after about 6 months of use last time I was on it. I have a Medrol pack that I will use if I must, but my skin is already damaged from steroids and I suspect other parts of me as well so I'm holding out as long as I can to see if alternatives work.

I took half of a muscle relaxer last night and slept like a baby. Most of today has also been good, but I suspect I'll need more tonight.  I suspect this is not a long-term solution. I'll keep you posted.

Thanks again.