Of course, I’m not just lying in bed in pain. I’m working with doctors trying to get me to the point where I’m stable. Since we’ve been chasing ‘stable’ for 15 years, it’s quite elusive. We are defining stable as a long-term situation where I’m able to do many of the things I want to do, such as socialize two or three times a week, sit downstairs with my family on a regular basis, and not be in incredible pain when I’m at rest. Also, being intimate with my husband would be nice.
When I was first established to have a chronic pain condition, I was put on opioids. One of the features common in EDSers is they often process medications quickly. I am one. So this 4 hour medication was processed in 3 hours for me. I needed to take it 4 times per day. What I didn’t find out until years later, in speaking with a therapist, I was likely going through a mini withdrawal every three hours. The pain was better, but I developed an awful online shopping habit in order to cope. I didn’t go into huge debt or anything, but it could have been better spent.
I’m now on a cocktail of medications that work very well. I won’t go into specifics, because that’s so individual, and my husband is my main pill manager, so I probably couldn’t even tell you if I wanted to! Included are an antidepressant, known to help treat chronic pain, a longer acting opioid, I have sleeping pills to use in an emergency, and have Marijuana based pills. I have cut down my opioid intake to a third of what I was taking in the beginning, and always look to cutting it down further.
I take three forms of Marijuana. I’m sorry to report it isn’t as fun as it seems. I take the pill form, and of course I don’t remember the name right now. I take the oils at night. My supplier uses olive oil, so it tastes like salad dressing made with paint chips. It doesn’t linger, though. I also vape in the morning. I vape a high CBD low THC blend, so it’s closer to the stuff they give to the kids with seizures. Closer, but not exactly. It has a little more THC, which I find helps the pain, but it’s not enough to make me stupid. None of this medication makes me “high” or “stupid” which is nice. The only time I’m out of it is when I’m in pain.
I have had a horrible year with my stomach, but over the past two years, I’ve managed to lose 100 lbs. Part of it is because I’ve been sick and had terrible stomach pain. Based on this, my gastroenterologist suggested I try a FODMAP diet plan to deal with the stomach pain. This plan isn’t cute. I didn’t believe it would work, either. I’ve tried eating plans for endometriosis before, no luck. But this was for a month, Andrew was going to help, it wasn’t THAT different from my eating now, and my stomach really hurt…. so FODMAP entails:
- Lactose free
- No garlic
- No onions
- No glucose fructose
- Low fruit
The Gluten-free is because of the sugars involved, the sugars produced are off limits. And because I’m low motility, little fibre, few vegetables because of allergies. I am working with a nutritionist, because this does look kind of bleak.
After the first month I was amazed. I felt so much better. My joints felt better. I had significantly less pain than before. Even in my fingers! I have since spoken with others who have had similar success. I need to meet with the nutritionist to see if there’s stuff I can add back. I was feeling so good, I didnt mind. I was naughty over Christmas and am paying for it. As predicted, my stomach still hurts, but the rest is not bad. Except my back…
For ten years, I’ve been getting 400 iu of Botox every ten months in my torso and thighs. I’ve been also getting it in my head for migraines for about a year, 200 iu. It has been injected various times at the Wasser Pain Clinic at Mt. Sinai in Toronto, Canada. The torso injections are known as trigger point injections, as the doctor feels around your body, and when he or she hits a tender spot, you scream, and they mark, then inject that spot. You receive about 4 injections per needle, for about 50 to 60 injections. The Botox is mixed with lidocaine, for some immediate relief. Unfortunately, as was predicted, my back hasn’t been taking well to the last two injections, and they may not work for me much longer. I see much doctor in ten days, we shall discuss.
A couple of things about this treatment, my physiotherapist is from England and has said this treatment has not proven effective for them there. I do not know how effective it is here, either, I know it worked for me…I could be a freak. At my last visit, my doctor mentioned he couldn’t start this treatment on someone now, that no insurance would accept it.
Doctors seem to really like to know I’m in therapy, because then they don’t have to be responsible for my ‘depression’ if I cry. I really don’t understand why so many doctors will seem surprised and uncomfortable if you shed a couple of tears when they say something really quite upsetting to you. For example, my gastroenterologist looked positively shocked tears slid down my face when he said “You’re don’t really have much of a life, do you?” We’ll, not when I’ve been desperately I’ll for the past six months, lost 40 lbs in the last 3 weeks and am tired and scared. Based on these tears he pronounced me, “Profoundly depressed,” and dismissed me. I certainly have situational depression, which is being depressed about your situation, but I’m working on it as best I can. Trying to be positive.
When I go to bed, I can be braced head to toe if I want! I have ankle braces, knee braces, wrist braces, finger braces, arm splints, a mouth guard, my CPAP machine, and my satin lined caps to protect my curls. I promise you, I look ravishing!
I don’t necessarily believe in so-called vitamin therapy, but I do take a series of vitamins. I take potassium, known as vitamin k, to help with some of the deficiencies that occur, based on my medication profile. I spoke to my pharmacist for this advice.i take vitamin E to help with dryness. The same reason I take flaxseed, general nutrition, and because I’m on so much medication that causes drying, it’s helping somewhat. My eye doctor even commented it’s likely helping! I take melatonin to help me stay asleep at night. I found there’s only one brand and style that helps. I take a multivitamin and vitamin D supplements, because those with EDS often have poor nutrient absorption. I take them rather haphazardly, so I don’t have too many nutrients. I had a high B12 count over the summer, am trying to watch this count, not exacerbate it. I also take a cranberry juice pill. My husband claims my pharmacist recommended this as a way to help defeat the raging full body yeast problems I was having. I wasn’t so sure, but they aren’t expensive, and I’ve not had a problem since I’ve started, except for some slight problems under my bust during the summer (totally expected, not as bad as previous summers)
So that’s basically what I’m doing at the moment. When I’m feeling a bit better, I will add more to my agenda. Pretty soon I will let you know what I’ve tried! 😀
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