It's Been Tough

This was originally posted to my blog, Diabetes Odyssey.

This is going to be a very personal post. I’ve been struggling pretty bad these past few months. It’s really been a combination of a lot of diabetes related stuff. And it’s just compounded by the fact that the cause of some of it is unknown, and you all who read my blog know that I am the type of person who just has to know what’s going on with my own body or I get really, really frustrated.

In September I decided to stop taking Gabapentin which is a medication I took for peripheral neuropathy symptoms. My endocrinologist had mentioned she thought it might be a partial cause of my weight gain and chronic fatigue. And it really wasn’t doing anything for my pain anyway.

I had to ween off the medication because it is very dangerous to just up and stop, so for a few weeks I took less and less until I no longer took it at all. Well, about three days after I had completely stopped the drug I experienced a three day stretch of very, very, I mean like frighteningly pale poop. This can be a symptom of liver trouble and I know Gabapentin is known for liver problems as a possible side effect…but why would it start after I ended the drug?

In any case after the third day my bowel movements returned to normal color and so I just made a note to mention it to my endo when I see her in December. I had experienced no other liver related symptoms.

OK, so, at that same time my blood sugar levels skyrocketed and refused to come down and stay down. For nearly two months I could not control them. I was constantly in the 200 to nearly 400’s all the time! I would take correction boluses and my BG would come down for a very short time and then skyrocket again for no ■■■■■■■ reason!!! Ughhhh!!!

I tried changing insulin vials thinking maybe the one I was using was bad. No change. I tried stricting up my diet (I had been slacking, but not that much). No change. I didn’t know of any illness or infection I might have. I tried everything I could to figure out what was causing these highs, but there just wasn’t any reason. It made no sense.

Finally in November one day I woke up and checked my BG and it was very close to normal. All of a sudden things were good again.

I find myself wondering if going off the Gabapentin did something to my system and/or liver that messed me up temporarily. I really don’t know.

Going off the Gabapentin has helped noticeably with my energy. I hadn’t realized, until I stopped taking it, how much the Gabapentin had been sedating me. I still have trouble with fatigue, but I am much more energetic and awake now. As a result I am able to get more exercise, although not much more because I still have excruciating neropathy pain. But every little bit is better than nothing, right?

One thing going off Gabapentin hasn’t improved is my weight. I have not lost any since stopping the drug. This is one thing that has totally destroyed me these past few months. I have fallen into such a deep depression that I have now virtually given up on all my hard work to get healthy.

Everything I’ve been working so hard on has lead to so few improvements that it is hard to keep moving forward, so the issue with gaining so much weight this past year has caused me to make a full reversion back to my old ways…back to when I was thinner but killing myself.

I am so insulin resistant that it takes a ton of insulin to keep my BG normal. Insulin causes weight gain so the more you take, the fatter you get. So by being healthy and actually taking the amount of insulin I need to keep my mother ■■■■■■■ BG normal I am packing on the pounds, even though I’m not overeating or eating anything that would raise my BG profoundly. But my body is so messed up that I need over 100 units of insulin a day to stay even close to normal.

I’m so depressed. I avoid looking in the mirror because I don’t want to see how bad it’s gotten. I hate putting on real clothes (as opposed to my grubbies I wear everyday) because it reminds me of how fat I’ve gotten. I don’t sleep well because I’m so fat I can’t roll over easily. My belly is so huge I look 9 months pregnant! The past three weeks or so I’ve just shut down and “forgotten” about taking care of myself. Why try? If I’m “healthy” I’m huge, and if I’m thinner I’m killing myself.

Either way I’m not happy.

From here on out I really don’t have any plan other than to beg my endo to raise my metformin dose and hope it helps enough with the insulin resistance to let me lose weight and keep my BG’s down.

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Tamra - I feel for you. I’ve not been up against it like you are now but I’ve seen shades of this. At the time I thought a medical intervention could help me and I tried to get a series of doctors to pursue some new course of action. It didn’t happen.

I can’t help but think that there must be some system that might look with more curiosity at your entire health picture . When I needed an authoritative second opinion for a diabetes complication diagnosis, I went to the Mayo Clinic in Phoenix. I was amazed at the comprehensive approach and how well they treated their patients. I told myself, if I’m ever faced with some serious health problem, I will return to the Mayo Clinic.

I don’t know your personal situation so this may not be possible for you. If it is, I suspect you would get some help there. In addition to the Phoenix clinic, they also operate clinics in Rocester, Minnesota and Jacksonvile, Florida. If you I have access to the Mayo Clinic, I highly recommend.

In the meantime, I wish you the best!

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@Tamra11, thank you for sharing this very personal story.

As hard as it must be to go through all this, it must have been hard to write. I can only hope that you can obtain some answers. I don’t have any direct experience to share, but my heart goes out to you.

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I am sorry you are having such a hard time. My very best wishes, Maureen.

can you take a lose dose of gabapentin just to help you sleep at night? right now i am taking 100 mg, and it helps me sleep through hot flashes.

is there any kind of weight bearing exercises you can do to build muscle and improve insulin sensitivity?

my dad (78 years old) has neuropathy in his feet. he exercises with bands and and weights from a sitting position. here are some videos i found on youtube

i put on muscle doing weights fasted, but i am not type 1 and don’t know how that would work. it takes me 3 months to see a real change from exercise.

i bought a second hand exercise bike and do bike sprints on it for 30 seconds at a time, with recovery, for a total of 3 sprints. i do that and lifting twice a week only.

I have a bike I ride, and a foot peddle I keep in front of the couch to peddle while I watch TV. The bikes don’t bother my neuropathy as much as other exercises. I also walk on a treadmill but not for long because that really hurts bad. I also do yoga and am looking into Tai Chi. Basically I do a lot of different things to stay active, but for some reason ever since my heart surgery I get really tired really fast, so I have to do small spurts of exercise several times a day.

My neuropathy doesn’t bother me at night. I only have symptoms (pain) when I am physically active.

I am also very insulin resistant. I had not been taking my metformin regularly but I have now worked up to 3 moving towards 4 a day and I have to say I have noticed a huge improvement in my insulin sensitivity. I am even coming down on my basals and carb ratios. I take about 100 units of insulin a day depending on what is going on. Have you tried that medication before? Just a thought.

I am on Metformin but I only take two pills (500mg each) a day. I’m hoping my endo agrees to increase the dosage.

besides metformin, building muscle i think is the best way to increase insulin sensitivity. and the best way to build muscle is bike sprints and weights/exercise bands. can you do that kind of exercise with your heart condition?

dr bernstein talks about the danger of pushing the heart if you already have heart disease. he talks about starting very slowly- and increasing the challenge on your heart over a long time span.

here is some more info for people recovering from open heart surgery:
http://www.drbillsukala.com.au/exercise/tips-for-safe-exercise-after-open-heart-surgery/

all the info says you need to consult a cardiologist about how to start your work out routine.

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Besides offering practical solutions, which everybody else has covered, all I can say is -

Please don’t hate or blame yourself. You ARE trying to figure things out, and you ARE trying to take care of yourself. But health is complicated and not entirely within our control. I am so sorry you are hurting right now. But you don’t deserve to beat yourself up. Please be kind to yourself. If you can’t, we will!

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You might want to look into a recumbent tricycle. Unfortunately, they are expensive, but there is a growing used market out there that can reduce the cost significantly.

Recumbent trikes are great because they basically remove all the pressure points when riding. There is no wrist pain, no back pain, no pain from having a seat stuck in between your legs. Imagine sitting in a recliner and pedaling - which is probably similar to your foot pedal in front of the couch device.

Here is a link to just one example - Greenspeed Trike

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