Sticky Blood-Hughes Syndrome Support

In Excruciating Pain and Sleepy all the time???

I knew Dar 58 has these symptoms, but do they ever stop! I'm getting very frustrated and overwhelmed! I know it's only since October that I've been diagnosed, but the docs say I've had this all my life! I'm tired everyday and the pain is real bad! I refuse to become a drug addict like in my field of home care nursing for almost 40 years, I've seen plenty of people, people like u and me go thru withdrawal! With me at their side to help them! I won't become one of those victims! I've seen way too much, but never an APS PATIENT! I'm at a point and know I shouldn't be, but I am ready to just stop all these meds that do nothing and leave it to GOD!!! I'm so tired of running into obstacles and miss my Son Jesse who passed 9 years ago around Christmas Holidays! My only child! It doesn't matter if I stay or go either way I'll be happy! Happy here if no pain! I want to be that fun loving DEBBIE AGAIN! The concert going crazy lady that persevered no matter what! I feel that gal is just waning away! Getting very depressed! I know I'm on right track with these appointments, but I'm sick of it all! I've lost count after 25 major operations! My one friend asked me if I shud go in the GUINESS BOOK OF WORLD RECORDS for the amount of operations I've had! I shud hope not!!! I'm sorry for sounding so down, it's a rainy day and I bought tickets for my beloved hubby, who has early stages of ALZHEIMERS, tickets to a beautiful BROADWAY SHOW IN NYC!!! I did it cuz it may b last time he's able and want to enjoy the rainy day!!! I know I'm in to moment of having a "Pity Party," for myself, but I guess that's normal! I just want to know does this ever go away when you become THERAPEUTIC with INR??? My local Hemotologist says NO! That being therapeutic has nothing to do with controlling pain, but I think it may help! If I'm THERAPEUTIC won't the blood pooling stop, ergo the pain??? Please if there has someone out there who's been there done that please help me to understand! I'm becoming desperate! Thanks for all ur unwavering, kind, and constant support! Don't know what I'd do without this Forum and My sissy Lynn/NANNY23!!! GODSPEED

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Love ya my friend and I KNOW FOR SURE, this will get better, as we have plans to have some of that fun you promised...LOL So.....I hope you had a great time with hubby, and enjoyed getting out in the rain...all I did was yes.......sleep again all day. Going to have my PT/INR tested again today as they increased the coumadin on Friday and was only 1.0. and that was with bridging with my Lovenox and my old dosage of coumadin for a week. I'm hoping for some answers on the sleeping all the time also, thats besides drs appts is all I seem to do lately since that awful bleed in early Dec. xx


Hi Dar! I wish I cud say I'm better! My INR is 2.9 & they think that better so I'm off Lovenox now for a while! Im supposed to get a CAT SCAN OF MY RTLEG! It's to rule anything out! It's weird that I have this excruciating pain and my APS SPECIALIST SAYS it cud be ur APS, but that wud be rare! My reply was that obviously I am rare! She agreed with me! No answer me this if she's an APS specialist then why is pain rare with APS! From Wat I read on the Forum pain with APS is NOT rare!!! ???? Please answer me that one! I'm going to Rheumotologist in NYC on 27, if I'm satisfied, I'll stay with him!!! No one seems to know NOTHING!!! I'm about ready to throw the towel in!!! I'm so damn sick of it all!!! How u doing? Other than sleeping & docs, get ready for some fun with me! Although I'm not sure wen I'll b ready! I went to Baby shower and fell asleep while she opened her gifts! Nice! Then just slept through the shower! Real nice! Came 200 miles to sleep! Oh well that's life in the big City!!! Please get well and take good care of urself!!!


I also have fibromyalgia. I take Cymbalta for my pain, which incidentally is also an anti-depressant. I figure with everything I have been through, miscarriages and bad PEs with a long recovery, a little antidepressant is probably not a bad thing! It was more prescribed for my fibromyalgia pain, although I have noticed that it also can help with bone and joint pain. And diabetic nerve pain incidentally. I also recently started taking plaquenil, which is also supposed to help with the bone and joint pain. I have only been taking it for a few weeks, and I hear it can take months to see the effects. It's hard to tell, but I do think the pain has been a little less recently. I went to my massage therapist on Saturday, who has been seeing me for 12 years now, and she said she could tell the difference in my body. whether that was just the Cymbalta, or the combination of both I'm not sure. But you may want to talk to your doctor about those options.

Good luck!

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