Archive | December, 2014

Update: CFS & Pain

31 Dec



Happy Holidays everyone! Hope you had a great Christmas & had time with loved ones. Let’s hope this new year is better for everyone!


Christmas Eve night I laid in bed crying in more horrible pain than usual all night/morning & I never got to sleep for even 5 minutes. Back when I was a healthy working man I could stay up for 2-3 days with no rest or averaged 1-4 hours of sleep & could still function at work. Now with being so ill, I need all the sleep I can get or I feel much sicker. I had to be up at 3PM on Christmas Day for my sister’s family coming over to open presents & have dinner. So I was up for 24 hours and my pain & CFS were off the charts.

I made the best of it & had to take mmj & pain meds so I could sort of function & be the “fun uncle” for the kids. I enjoyed every second while I could. After dinner I couldn’t keep my eyes open, my CFS was bad so I fell asleep in my chair. My family was laughing at me for sleeping but they don’t understand what CFS is like. I could hear them but couldn’t open my eyes for anything or even move for about 4 hours until I got up to go to bed. I missed most of our family party but I’m so thankful to have that much, some of my friends were isolated or in the hospital that day.

I’ve been having more pain than usual (as if that’s possible) I thought was RSD that’s now moved to my whole spine but since the intensity comes and goes I don’t think it’s RSD. Could just be my DDD, cysts & herniated discs causing nerve damage. This pain starts at the base of my skull (c-spine) and runs down each side of my thoracic & lumbar spine. The pain is not my usual chronic pains but has more burning & nagging like a thrown-out back. Most people would be yelling out in pain but I’ve had a high tolerance to pain my whole life so I can just bite my lip and lay there crying quietly. It’s the kind of pain no meds can take the edge off.

Since I’ve exhausted all pain management options to go with my pain meds all I have left is ketamine infusions to get soon. I’m not allowed to get any surgery so I can’t have a pain patch implanted in my spine where you press a button to relief the pain by pulses in the back (sort of like a tens unit with remote control under the skin on your spine). I’ve been fighting with UCDavis trying to get into their infusion center but they keep denying my referrals. They said it’s because once they deny you the first time then you have to wait a year to get in, yet they denied me the first time by mistake! So it makes no sense. I have to wait 8-10 more months I guess. I had one ketamine infusion but it was low dose & not a coma dose just to see if I was allergic to it but it seemed to help. I’m still taking morphine, norco & medical marijuana for pain but it doesn’t do much especially for the spine pain.

CFS to me feels like there is sludge or poison in my veins throughout my whole body & everything in my body is taking a nap. My brain is even napping. I can barely move, think, & just lay in my chair. My brain will say “grab your water you are thirsty” but my arms will feel so heavy like lead weights, I can’t seem to want to grab my water. So I watch a lot of TV to pass the time. I would explain CFS/ME like when you are in a sleep coma or at the dentist under gas, you are conscious but you can’t really move or react. I haven’t driven in 5-6 years & CFS is one of the reasons. Many years ago I would fall asleep at the wheel driving on the freeway or even while standing up at work so it was dangerous.


This may be just my body & my case but if I had to recommend any medication that has done wonders for me it’s Norco. I take 40-60mg when I take my daily dose & another 10-20mg as needed throughout the night. I don’t have the addiction gene in my body so I’ve never been addicted to anything but if you are easily addicted to things (alcohol, cigarettes, meds..) then I would try another non-narcotic option such as tramadol (which did nothing for me except confuse my brain). For me Norco gives me slight energy, takes the “edge” off the normal pains, has been a life saver with my IBS-D, & helps with other issues. All of my other meds, I couldn’t even tell you if they are working or doing anything.

Happy 2015

A new year is coming & I would like for you all to have a much better 2015 that is healthier, happier & full of love. We can do this. I may sound like I’m complaining above but I’m just sharing the truth of my story to help others understand or relate to illness or being bed bound. I’m at peace with my life & illnesses, I think that’s an important stage that everyone should try to get to. If you watch “It’s A Wonderful Life” it really puts your life in perspective & you realize no matter how bad your life is, there are many things to be thankful for & life could always be worse. Focus on the good things you do have, not the bad or negative things & that will help you get by. Stay strong friends.


Started Back On 3 Years Of IVIG Today

20 Dec


IVIG (Gammagard) Infusion Today With New RN

After a short break I am now back on IVIG Gammagard infusions. I started my first round of a 3 year study program today with my new male nurse. I’m still on full dose 32g/300ml infused over 3-4 hours once per month. I may be going on a 4 infusions per month schedule or increasing my dose soon.

The new nurse is nice & strict, professional so I know everything is done per standards. I infuse at home in my chair while watching tv. We tried to infuse yesterday but I had a previous 24 hour cluster headache that wasn’t going away and the vein we used clotted so the line filled up with air bubbles. He pulled the line and we stopped. My vitals were not good so will called my doctor & she postponed it for a day. I explained to my RN I have MTHFR & I clot very easy or if I take a baby aspirin I bleed out easy.

Last time it took 11 collapsed or blown-out veins to get one good vein, I looked beat up or like a pin cushion. Today it only took 5 veins & one blew-out pretty good. My veins I’m told collapse & vasospasm or they roll. Nurses always have a hard time.

The nurse slowed the infusion rate to 5 hours (instead of the pervious 3 hours) and gave me an extra 500ml of saline afterwards (which the previous nurse never did). As always I took my precautionary meds (listed below) so I hope to avoid aseptic meningitis tonight or tomorrow night like I usually get. The meningitis and other symptoms from the infusion are horrible & if they lasted more than 3 days I think I would have to take my own life (it’s that painful in the brain). Last time I couldn’t move, talk, breathe, see…..& the hospital treated me like I was a liar. I have a high pain tolerance but this was bad. I hate going to the ER!

So I’m very exhausted and even fell asleep during the infusion so I am going to rest up. Just wanted to post this in case anything goes wrong later on. Staying positive.

List of pre-meds for 30g/300ml of Gammagard IVIG infusion:

Benadryl 50mg
Tylenol 1000mg
Caffeine (I drank a coke)
E-Lyte (electrolytes)
Plenty of water to hydrate veins
*These will hopefully help you with side effects & the brain swelling or common migraines

Stay strong Spoonie family. Happy Holidays.