4 ms·

I have an autoimmune disease; type 1.5 diabetes, formally called LADA (Latent Autoimmune Diabetes in Adults). I'm insulin dependent, like type 1, but the diseas

by zzyx1yz 10y ago

I have an autoimmune disease; type 1.5 diabetes, formally called LADA (Latent Autoimmune Diabetes in Adults). I'm insulin dependent, like type 1, but the disease didn't manifest until my 40s, like type 2. I suffer from moderately severe diabetic foot pain. My doctor prescribed some medication that provided marginal, at best, relief. About a year ago, I had a persistent fever. I took some aspirin to knock down the fever (I almost never took aspirin before that) and discovered that it provided significant relief from the foot pain. More recently, I had a bad cold, and I took some cold medicine that includes acetaminophen, something that I also almost never took before that. It seems to help even more than aspirin. I am wary of taking acetaminophen regularly, because of the warnings about liver damage, but it is something I am considering for those times when the foot pain is severe. What I would recommend for people suffering from these kinds of problems is that they embrace the idea of Quantified Self. Start keeping a diary of everything. The things you eat, the things you do, and the symptoms you experience, in excruciating detail. Then start looking for patterns and correlations. Put the data into a spreadsheet, generate charts. Learn statistics, learn about correlations. Learn Bayesian Probability. You may be able to find the specific triggers that cause your symptoms, and maybe the things you can do (or avoid) to reduce your symptoms.

yladiz 10y ago
Not sure the causes of the foot pain, but if you haven't use many NSAIDs before, check out ibuprofen. It's safer than the other drugs in its class and performs better at most functions including inflammation. The major benefit of acetaminophen over ibuprofen is that ibuprofen can cause upset stomachs more easily whereas acetaminophen is less likely to do so. I'd be careful and consult your doctor about the pain though, since any NSAID can cause complications for your body if you have specific issues if the NSAID is used over a long period of time. Here's one article about NSAID use and one article about the FDA warning about long term usage of NSAID: 1: http://www.vox.com/2015/8/17/9165189/best-painkiller-tylenol-aspirin-advil http://www.vox.com/2015/8/17/9165189/best-painkiller-tylenol... 2: https://www.nytimes.com/2015/07/14/science/experts-urge-sparing-use-of-nonaspirin-painkillers.html https://www.nytimes.com/2015/07/14/science/experts-urge-spar...
- Mz 10y ago
  If you do take ibuprofen, be aware that you probably need to also take extra B vitamins. It is known to deplete a specific B vitamin. A quick google suggests it is B12, but I suggest you do some research of your own to confirm that. I took daily ibuprofen for years. It is commonly prescribed for my condition. My need for B vitamins plummeted when I finally got off of it.
  - yladiz 10y ago
    It looks like it lowers levels of folic acid, which is vitamin B9: http://pennstatehershey.adam.com/content.aspx?productId=107&pid=33&gid=000338 http://pennstatehershey.adam.com/content.aspx?productId=107&.... Looking at the other articles for B vitamins on ADAM, it seems that only folic acid is affected.
    - Mz 10y ago
      Good work!
- candiodari 10y ago
  Firstly, do not self-medicate. And do not take online medical advice : go see a doctor. The reason you have foot pain is that your blood is thicker : it has a harder time flowing further away from your heart. This has 3 consequences, not just one. 1) is feet, or other extremeties, not getting enough oxygen. This will result in weird tickling, then numbness, then necrosis, which will hurt. 2) is nerves deteriorating or dying in your extremeties due to repeated instances of 1. This can lead to pain upon the slightest stimulation. Someone touches your feet and you feel like a needle has been stuck entirely through your foot. 3) is too much sugar in your blood. This is why it's thicker. This will result in a big boost to whatever bacterial infections you already have in your feet (we all have a few). If you must take online advice then please: First, a number of things have now become really stupid. First on the list: you need loose fitting shoes now. Note: not sandals. Sealing your feet in "flexible" sport/running shoes can worsen your condition rapidly, especially if you lace em tight as well. Likewise walking around barefoot is stupid, especially outside. You need comfortable and fresh socks at all times, and you should not walk around without having your feet covered, given what can happen if you hurt your feet. Letting your feet freeze, even just to a point that would be fine for normal people, has just become stupid. If it happens anyway, fix with water. Start with ever so slightly warm water and slowly raise the temperature. What works best is having warm water flow over your feet. The point of this is to warm the blood going through it, so despite how it feels the first moment that this actually has an effect is 2 minutes after you've started doing it. You want to do this for 4 minutes absolute minimum, but 10 minutes is certainly better. Second, when you feel this happening : change your posture. The easy way to provide relief is to lower pressure, and you do that by making sure the vertical distance inside your body is minimized, and nothing is pushing on anything else (e.g. crossed legs, sitting on your feet or knees, ...). If possible, lie down, if not, at least sit down. Change position regularly and move. Aspirin can help, but go easy on it. You might consider having the lowest possible dosage you can find, and just taking it constantly. Needless to say, you should discuss with a doctor first. Be careful about mixing alcohol and medication, even in small quantities. It may also be good to have a "training regimen": stretch your feet every day at least. Move every toe forward and backward a few times using your hands and bend the foot every way it'll go a few times. Thirdly, if you don't keep your feet impeccably clean, I guarantee you you will regret it. Warm (not hot, warm) water, twice a day, at least. If your skin dries out skip the soap one out of the two times, or find a better soap. Fourthly, any slight wound to your feet can infect like you wouldn't believe and result in amputation (or death). If your cat playfully and slightly breaks the skin on your feet, and it doesn't even hurt, you still have a doctor clean it and prescribe antibiotics for a day or two. Serious wounds need to soaked in alcohol (medical alcohol, vodka works but is not as good, so only for emergencies). You go back for checkups.
throwaway9991 10y ago
How long did it take to get foot complications in your case and how good was your diabetic control? I'm also "late onset" type 1, (diagnosed at 27). But they don't call it LADA. The weird thing is that they could not find any antibodies, but since my C-peptide level was very low at the moment of diagnosis they call it Type 1.
spraak 10y ago
Have you tried medical cannabis for the pain? My wife has an autoimmune disorder and uses the raw cannabis - which has THCA, a precursor to THC, which doesn't get you high but greatly helps her pain and inflammation caused by her over active immune system
yegle 10y ago
I'd say talk to your doctor that you are taking certain medicine just to make sure the doctor knows about it. Beware of placebo effect (which might be good in your case).
throwawaylalala 10y ago
Have you researched the ketogenic diet?
ryanmarsh 10y ago
+1 on the Quantified Self concept. I lost a daughter to cancer. The disease has something like a 5% survival rate. We were at a top tier children's hospital with a doctor who handled more cases of this disease in clinic than anyone else in the country. Still most of the time nobody knew what the fuck was going on. So I started a log in a spiral bound notebook. In 15 minute increments we jotted done notes of what was happening and her reactions. In doing so we could clearly prove to the staff which medicines she was reacting too and how. This greatly improved her quality of life, which was all we could hope for. I have severe pain from several back injuries that has taken me years to recover from. Following a similar approach of quantified self has enabled me to discover what the triggers for my pain are and how to manage them physically and medicinally.
JoshMnem 10y ago
Would you be willing to discuss your logging methods? I'm putting together a group of people doing self-tracking for autoimmune conditions in Berkeley (or remotely), and I'm trying to get the logfile format correct. (Free software project) josh@codeselfstudy.com

by zzyx1yz 10y ago

yladiz 10y ago

Not sure the causes of the foot pain, but if you haven't use many NSAIDs before, check out ibuprofen. It's safer than the other drugs in its class and performs better at most functions including inflammation. The major benefit of acetaminophen over ibuprofen is that ibuprofen can cause upset stomachs more easily whereas acetaminophen is less likely to do so. I'd be careful and consult your doctor about the pain though, since any NSAID can cause complications for your body if you have specific issues if the NSAID is used over a long period of time. Here's one article about NSAID use and one article about the FDA warning about long term usage of NSAID: 1: http://www.vox.com/2015/8/17/9165189/best-painkiller-tylenol-aspirin-advil http://www.vox.com/2015/8/17/9165189/best-painkiller-tylenol... 2: https://www.nytimes.com/2015/07/14/science/experts-urge-sparing-use-of-nonaspirin-painkillers.html https://www.nytimes.com/2015/07/14/science/experts-urge-spar...

Mz 10y ago
If you do take ibuprofen, be aware that you probably need to also take extra B vitamins. It is known to deplete a specific B vitamin. A quick google suggests it is B12, but I suggest you do some research of your own to confirm that. I took daily ibuprofen for years. It is commonly prescribed for my condition. My need for B vitamins plummeted when I finally got off of it.
- yladiz 10y ago
  It looks like it lowers levels of folic acid, which is vitamin B9: http://pennstatehershey.adam.com/content.aspx?productId=107&pid=33&gid=000338 http://pennstatehershey.adam.com/content.aspx?productId=107&.... Looking at the other articles for B vitamins on ADAM, it seems that only folic acid is affected.
  - Mz 10y ago
    Good work!
candiodari 10y ago
Firstly, do not self-medicate. And do not take online medical advice : go see a doctor. The reason you have foot pain is that your blood is thicker : it has a harder time flowing further away from your heart. This has 3 consequences, not just one. 1) is feet, or other extremeties, not getting enough oxygen. This will result in weird tickling, then numbness, then necrosis, which will hurt. 2) is nerves deteriorating or dying in your extremeties due to repeated instances of 1. This can lead to pain upon the slightest stimulation. Someone touches your feet and you feel like a needle has been stuck entirely through your foot. 3) is too much sugar in your blood. This is why it's thicker. This will result in a big boost to whatever bacterial infections you already have in your feet (we all have a few). If you must take online advice then please: First, a number of things have now become really stupid. First on the list: you need loose fitting shoes now. Note: not sandals. Sealing your feet in "flexible" sport/running shoes can worsen your condition rapidly, especially if you lace em tight as well. Likewise walking around barefoot is stupid, especially outside. You need comfortable and fresh socks at all times, and you should not walk around without having your feet covered, given what can happen if you hurt your feet. Letting your feet freeze, even just to a point that would be fine for normal people, has just become stupid. If it happens anyway, fix with water. Start with ever so slightly warm water and slowly raise the temperature. What works best is having warm water flow over your feet. The point of this is to warm the blood going through it, so despite how it feels the first moment that this actually has an effect is 2 minutes after you've started doing it. You want to do this for 4 minutes absolute minimum, but 10 minutes is certainly better. Second, when you feel this happening : change your posture. The easy way to provide relief is to lower pressure, and you do that by making sure the vertical distance inside your body is minimized, and nothing is pushing on anything else (e.g. crossed legs, sitting on your feet or knees, ...). If possible, lie down, if not, at least sit down. Change position regularly and move. Aspirin can help, but go easy on it. You might consider having the lowest possible dosage you can find, and just taking it constantly. Needless to say, you should discuss with a doctor first. Be careful about mixing alcohol and medication, even in small quantities. It may also be good to have a "training regimen": stretch your feet every day at least. Move every toe forward and backward a few times using your hands and bend the foot every way it'll go a few times. Thirdly, if you don't keep your feet impeccably clean, I guarantee you you will regret it. Warm (not hot, warm) water, twice a day, at least. If your skin dries out skip the soap one out of the two times, or find a better soap. Fourthly, any slight wound to your feet can infect like you wouldn't believe and result in amputation (or death). If your cat playfully and slightly breaks the skin on your feet, and it doesn't even hurt, you still have a doctor clean it and prescribe antibiotics for a day or two. Serious wounds need to soaked in alcohol (medical alcohol, vodka works but is not as good, so only for emergencies). You go back for checkups.

throwaway9991 10y ago

How long did it take to get foot complications in your case and how good was your diabetic control? I'm also "late onset" type 1, (diagnosed at 27). But they don't call it LADA. The weird thing is that they could not find any antibodies, but since my C-peptide level was very low at the moment of diagnosis they call it Type 1.

spraak 10y ago

Have you tried medical cannabis for the pain? My wife has an autoimmune disorder and uses the raw cannabis - which has THCA, a precursor to THC, which doesn't get you high but greatly helps her pain and inflammation caused by her over active immune system

yegle 10y ago

I'd say talk to your doctor that you are taking certain medicine just to make sure the doctor knows about it. Beware of placebo effect (which might be good in your case).

throwawaylalala 10y ago

Have you researched the ketogenic diet?

ryanmarsh 10y ago

+1 on the Quantified Self concept. I lost a daughter to cancer. The disease has something like a 5% survival rate. We were at a top tier children's hospital with a doctor who handled more cases of this disease in clinic than anyone else in the country. Still most of the time nobody knew what the fuck was going on. So I started a log in a spiral bound notebook. In 15 minute increments we jotted done notes of what was happening and her reactions. In doing so we could clearly prove to the staff which medicines she was reacting too and how. This greatly improved her quality of life, which was all we could hope for. I have severe pain from several back injuries that has taken me years to recover from. Following a similar approach of quantified self has enabled me to discover what the triggers for my pain are and how to manage them physically and medicinally.

JoshMnem 10y ago

Would you be willing to discuss your logging methods? I'm putting together a group of people doing self-tracking for autoimmune conditions in Berkeley (or remotely), and I'm trying to get the logfile format correct. (Free software project) josh@codeselfstudy.com