Adrenal insufficiency 

​It seems a lot of my current symptoms turned out to be related to my Addison’s, not my CFS or depression alone. I increased my hydrocortisone from 20 mg to 40 mg and feel completely different. Normally this is the ‘stress’ dose used when the body has an infection, Injury etc., but I’m staying on it for awhile, until my adrenals recover. 

When my cortisol is too low, it means my adrenals are not producing enough. The most common symptoms are severe fatigue, loss of appetite, weight loss, nausea, vomiting, diarrhea, muscle weakness, irritability, and depression. These are the exact things I’ve been having but I just thought it was my CFS acting up, an infection, seasonal depression and a stomach flu. Now all my symptoms are gone.

I’ll be seeing my endocrinologist in March. We need to get my dose straightened out so this doesn’t happen again. What a waste I didn’t realize sooner.

Struggling 

I have not been well the last 2 weeks and only managed 3 walks  (6 min) per week. I feel completely drained.  I think it’s from the very busy days I have on Thursdays. I go to physiotherapy, have a 2 hour class and drive 1 1/2 hours plus usually run an errand, like picking up my mail, after weeks unattended.

Anyway, I am bedridden 3 day’s after, not able to cook or even get enough fluids down me. I feel extremely weak. I don’t know if the severe fatigue is from having such a busy day on Thursday or the core building exercises the physiotherapist gave me, or a combination of both.

I HAVE to do the exercises though. My back has been so bad since January, and the pain is not helping my fatigue or overall mood. They would be easy exercises for most, but they are difficult and tiring for me because of my severe deconditioning. I do still do them almost every day, even if it’s the only thing I can do.

I’m really worried about this week as I have physiotherapy tomorrow and Thursday plus class. Wish me luck.

Update: missed Tuesday physiotherapy session as too exhausted.  Am becoming increasingly depressed, agitated and anxious.  I have no motivation and barely care about anything. I don’t see my psychiatrist till mid January. I don’t know if this is S.A.D, my my dad’s recent death or medication related. Sucks.

Been a while

Boy. It’s been a long time since I wrote.  Today I’m off to the Environment clinic to see my Dr.  We’re going to talk about my IV.’ s,  as the last one I had was to strong and make me sick, it was called a Myer’s cocktail with Magnesium, Vit C,  and the B vitamins and seemed to be too much for my system to handle,  so we’ll talk about lowering the dose.

Also,  I want to try the fibromyalgia drug, Cymbalta, I hear it’s good for pain and energy, and also helps with depression and anxiety,  so it sounds perfect.
I have to go off the drug I’m on now as it altered my heart rhythm making my QT interval too long and posing risk of arrhythmia’s. Unfortunately,  as I drop the dose my anxiety  is coming back pretty strong so I have to get on something else fast.

My CFS has not been bad, I’m about 30 on the CFS rating scale. I was like a 10-20 most the summer,  so definitely an improvement. I’ll make it out about 2 days a week,  be up 1 or 2 days as long as I’m quiet , like reading,  and sleep (crash about 22 hours) 3 or 4 days a week.  I’m aiming for being up 5 to 6 days a week, but I need a protocol of some type to follow ie pacing strategies, daily short walks, easy stretching, good sleep patterns, mindfulness, the Cymbalta, IV ‘s, eating top notch foods and avoiding the gluten religiously and milk 90% of the time. Very hard to follow protocol though especially  when I’m depressed/anxious.

So I’m hoping the Cymbalta will help me with that and increase my motivation.
I go to school now, part time,  and I’m really enjoying that, tough it’s mind boggling sometimes. It’s been since 1996 since I was in school last.

Anyway,  here is the CFS rating scale for others like me out there and anyone interested in general. Enjoy the autumn,  Take care all.

CFS & Fibromyalgia Rating Scale

    
100   Fully recovered. Normal activity level with no symptoms.
90   Normal activity level with mild symptoms at times.
80   Near normal activity level with some symptoms.
70   Able to work full time but with difficulty. Mostly mild symptoms.
60   Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.
50   Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Symptoms mostly moderate.
40   Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.
30   Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.
20   Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.
10   Mostly bedridden. Severe symptoms.
0   Bedridden constantly. Unable to care for self.

DETOX

Detox off prescription drugs and alcohol

Jan 25 2015

I am going into inpatient detox on Tuesday morning.   They say how long I stay (2 or 3 weeks) will depend on how i cope with withdrawal.  After withdrawal there is a 1 week program on keeping sober which i can attend or they might decide (we together that is) if a 28 day inpatient detox would be helpful.  I’d like to keep an up to date running commentary on my detoxification/withdrawal but we have no use of electronics of any sort, so instead i will journal daily and when I’m allowed back on line I will post these reports, 2 or 3 days worth, or even just 1 day if it was a long entry.  So keep your eyes out!!  Here is a link to all my drugs I take, some are valid medical prescriptions, the ones I abuse and need to detox off of are: K-pins (clonazepam), Serax, Baclofen, Seroquel, Flexeril, Lyrica,and Alcohol.  I was checking all the interactions on a medical site and i will definitely O.D. if i don’t stop.  Wish me luck!

Lovely, lovely Lyrica

So, does anyone else out there get wasted off Lyrica? A very strange side effect! My Dr. prescribed one 75mg twice a day. I was hesitant to take them and they sat in my drawer unused for months. They’re for my fibromyalgia pain but also for generalized anxiety disorder. Anyway, I took one yesterday morning and started feeling kinda floaty and dizzy but in a good way. I felt happy and kinda energized. Later, I took my second pill and that’s when I started to fly. I was kinda stumbly and slurry but also felt blissful, at peace, like everything was right in the world and I loved everything. I also got starving and ate cheese and milk, I craved them highly, and I’m not supposed to eat them. I also smoked a lot and couldnt sleep, felt kinda hypomanic. So, now I don’t know if I should be taking these things on a daily basis, this seems a powerful drug. I can’t walk around stoned all the time. Any one else experience this? Does this go away after a bit. Having a day without anxiety sure felt wonderful, its been a long while I felt so good. Comments please, thanks 🙂

Withdrawal (con’t)

Still fiddling with my psych meds. Have tried dropping Seroquel to 75 mg from 100 mg a few times but my anxiety, irritability, panic were too bad.  My dad is ill and quite disabled and I’m trying to help my mom care for him and it’s getting very stressful. I’ve decided I’m going to increase my clonazepam to 0.5mg 3x a day, which is double what I’m on now, but still half of what I was on. I kinda hate to do that because I’ve been working so dam hard to wean myself off this stuff, but I’m just too stressed.  I will drop it again and eventually go off it entirely when things calm down a bit. 
Then, with the boosted clonazepam, I plan to drop the seroquel to 50 mg, 25 at noon, 25 mg at night, and see if my nerves are ok that way. Then I will try no seroquel, just clonazepam.  If I find I still need a mood stabilizer,  I am going to talk to my Dr. about switching over to topimax. It’s an anti-seizure drug that also acts as a mood stabilizer, and unlike Seroquel, most people lose weight while on it, not pack on 35 lbs like most people do on seroquel.
So, I’m going to play around a bit and hope I don’t totally fuck myself up. Wish me luck and please let me know if you have any experience with topimax. Thanks.

My abuser, my first prescription

I have several illnesses and take quite a few meds prescribed for me by the numerous Dr.’s I’ve seen since my first chronic condition appeared at 20.

I was living with an abusive man, drinking copiously, and eating little, when I developed my first chronic illness, GERD, ie gastrointestinal reflux disease.  It came in the form of excruciating pain in my chest and down my arm that went on for 3 days before I headed to the hospital.  During this time my boyfriend kicked me repeatedly for  lying in bed and not having his supper ready.

I spent 2 weeks in the hospital before they determined I had a large erosive ulcer in my esophagus, caused from a combination of too much liquor, too little food, extreme stress, and the high acid content of my stomach.  An acidic bile was constantly being refluxed up into my esophagus.  This was occurring because my esophageal sphincter was ‘floppy’ ie the natural tension in the sphincter muscle that was supposed to keep the food/acid/liqour in my stomach was not present.  The alcohol and stress were part of this floppiness,  poor diet, and also good old genetics.

So I was put on a proton pump inhibitor to decrease the acid in my stomach, given a diet to follow, some other common advice for the condition, and have been on various inhibitors ever since – 27 years.  I still have problems with reflux/GERD when I overeat, gain weight, drink etc.  The old pain comes back which smartens me up pretty fast, feels like a heart attack. 

I don’t know the long term effect of these inhibitors on my body except for the study done on men that showed increased stomach cancer rates after 5 years on one particular drug.

On the bright side, after 2 weeks in the hospital away from the influence of my boyfriend, my aunt and uncle talked me into moving in with them and this was the first step in leaving my abuser.  I never was with a physically abusive man since.