WOW! This is so sad, but I soooooo understand where you are all coming from, EXCEPT your partner in life. I won't boast --- well, maybe I will, because mine deserves to be bragged about. But understand that we've been married almost 50 years, so we take those "vows" seriously. He sure does as he has been through it all with me: PMS FROM the beginning; type AAA personallity so every thing I did was full blast, then totally wiped out; TMJ/braces and TWO surgeries; The Big H surgery, then to appease me, we adopted an adorable baby boy - who is now 28 and still living at home! THEN - CFS/FM - in 1990, followed by migraines - every few days, which meant at least 2 full days - out of operation; then the BIG M; kidney stone the size of a shooter marble and all that entailed to PASS and HEAL in 2001; then a knee injury and my whinning and moaning and walking like a cripple; THEN the other knee and surgery - and in 4 years THAT hasn't improved and then 2.5 years ago a diagnosis of POLYCYTHEMIA RUBRA VERA!!!! The fatigue of that in the beginning was unbelievable and THEN the cold toes, followed by BURNING FEET - so he'd put the socks on then I'd rip them off. Thankfully, on my MPDchat group, the moderator told me to take aspirin - which I should have been taking anyway for the PV, but it scared me because of the potential stomach issue. But it helped - until last summer when my family finally called in Gentiva to see what HELP they might be able to offer - like exercise routine, etc. I jumped on that, but was quickly "sat down" - the exercise caused the EM TO FLARE!!!! AND right in the middle w/the swollen feet, etc., which I've never had unless there's an underlying issue - I awoke on a Sat. a.m. with amazing back pain, nausea, etc. & by noon I was in ER with ANOTHER KIDNEY STONE! As the kidney began healing, the swelling ceased, but the EM continued. Meanwhile we have moved to a new home - with stairs as I am determined NOT to allow all this to change my life completely [ I have to be VERY CAREFUL]. I've been okay - until yesterday and now the EM is flaring. HOWEVER, I must share that it's no where NEAR the PAIN I see expressed here. Mine is also a "follow-on" to the PV, but as you experienced, my PCP and his associate would not even discuss it w/me and told me to KEEP EXERCISING! My Hematologist was on vacation when this was happening, but when he returned in August, he reluctantly dx'd. the EM. WHY RELUCTANTLY? ????? And no offer of medication/info. SO, THANKFULLY, through reading here and some posts on my MPNForum.com, tidbits get dropped and I am working with whatever I can find on my own. As many here, I gave up "life as I'd always known it" about 4 years ago - falling flat on my face coming out of re-hab for the knee surgery just put the brakes on my ever wanting to re-live THAT incident in public ever again, so like many here, I've become a recluse. My husband, who was NEVER EVER asked to stop by the grocery store on the way home, now does ALL the shopping - has for 4 years. My son does the major chores in our home otherwise we would be quarantined as I sure can't do them - and he's great - we laugh that if you stop moving, he'll rip the clothes right off your body and chuck them into the washer! He keeps the floors spotless - as he knows I must walk around most of the time w/bare feet. OH, sometimes I do wear socks I ordered from Dr. Whitaker in Newport Beach - you can googgle him. They are for diabetics, but when the pain is overwhelming, I do wear them for a few hours and they HELP. Because of the PV, poor circulation IS a factor and those work wonders. They might also help with the EM....not sure. One thing I have read - DO NOT SOAK YOUR FEET IN COLD/COOL WATER! SO, my life goes on and who knows WHEN the FM/CFS hit as the PV pretty much covers it all and the 24/7 pain is sometimes almost unbearable. I'm thankful I have my husband and son ---- and three lovely daughters, 3 natural granddaughters, 4 adopted grandchildren, 3 adopted great grandchildren and a 7-mo. old great grand son --- all to keep my mind off my pain. Just wish they all lived nearby, but they are spread around the four corners of the US and I am in N. CALIFORNIA.
