Help?

I’ve had an undiagnosed/helped physical condition that has turned into mental/overall conditions either directly relating to physical or separate, like a severe change in overall self. will explain physical issues first…For a year, have had 24/7 CHRONIC 20 OUT OF 10 bilateral leg pain of all kinds- burning, shooting, stabbing, pricking, sort of cramping-all this for about 6 months, but what has remained and is CONSTANT immediately upon standing, pain from hips down, to the touch too, also extreme aching/soreness, stiffness/tightness, heaviness/fatigue (as if you’ve been standing in one spot all day/ran a marathon as well as 24/7 twitching and bubbling-like feeling from hips down, ALL over legs, that seems to be exasperated by just standing, walking a bit or stretching in bed. Also have such pressure pain/ache/squeezing/flexed heaviness that when I lift leg to get off it for a sec, I can feel the blood and pressure dispersing again in feet. This last part seems like it is just what the act/pressure/weight of standing should be like? Twitch is least of the issues but is also very maddening. with all this, I’m in CONSTANT pain and maddening discomfort…Mentally/overall it seems I’ve become Catatonic? Disassociateve? like a 24/7 state of trauma/shock? Not sure what I can/can’t do even min-min. not SURE of what is exactly happening/how to explain it, could be all these things listed.I CAN’T TAKE it.

there’s been NO DIAGNOSIS of any kind for ANY OF IT becuase the few tests they did for the physical problems were negative. Have seen multiple Dr’s/specialists that don’t know and push you away and don’t know what to do…I’ve said to them I don’t even want to wake up anymore…and they look at you and say “I don’t know what to say” or I don’tknow and walk away…Being in this constant torturous state and AWARE of it, b/c you’re not ‘dead’ causes extreme terror and sadness that I’ll always be like this…I wake screaming and moaning in terror and anguish. All I can do is lay down. And if I do something like go in the car or eat at table, I ‘look’ fine, but I can’t get back all this time

SweetGal,

I am so sorry you are dealing with this. Emotional and physical health go together with diabetes. I have dealt with my fair share of emotional issues over the year and as you must know, how you feel about your emotional health will no doubt impact everything else.

Unfortunately, no one here will be able to say what the physical or emotional issues are. I understand the issue with pain, but i suspect what you describe is not related to diabetes. I know in our community we understand that diabetes impacts everything. Unfortunately it can also impact nothing.

I have both RA and AS in addition to type 1 diabetes. I did not see if you are type 1 or type 2, but if you are type 1 it is common that a second autoimmune disease can turn up. If you have type 2 diabetes it is unlikely that diabetes is a predictor of the serious pain.

Having lived with arthritis now for over 20 years it does sound like you are describing could be arthritis. I urge you to suggest arthritis to you PCP or your endocrinologist and to do it sooner than later.

Obviously I have no idea what correct diagnosis might be. I urge you to going with your mental health professional, they can make a world of difference. But also see the endo or the PCP, explain the issues and ask if you can be referred to a Rheumatologist . Rheumatologists are best equipped to determine if you have arthritis or not. It is worth the trip just to start a good relationship if no for this time, then next.

I wish you the very best. Please let us know how things work out. If you wish to reach to about arthritis I will be happy to answer questions and point you in the right direction for material.

Many blessings.

Rick Phillips

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I had pain such as what you describe after gaining glucose control very suddenly and very aggressively after two years of undiagnosed T1. It was torture, day and night, and exhausted me mentally and prevented me from being able to sleep, stand or walk for 8 months. It is called treatment-induced neuropathy or insulin neuritis. Doctors don’t seem to see it often or know about it because it is rare. You have to have had long-term hyperglycaemia and get into a tight glucose range abruptly and permanently for this neuritis to occur. I hope this is what you have because it reverses over time. It is poorly understood but there is literature about it if you research it.

thanks for reply, but i don’t have sudden good control of sugars, they are long term high so this is prob not what is going on, i wish it was :frowning: bc I’m about ready to throw in towel, as i don’t even remember myself or life before all this happened, and am not IN it…no dr can help or know anything…all i can do is sit/lay and cry all day and barely get up to eat…I hope I’m not the only one in the world as sick as I am, as my therapist said I’m the worst he’s ever seen. Do you think God can help? Ever see a sign that god/angels exist?

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I am so very sorry you are suffering. I still think neuropathy might be the name of this torture, even if it is a different type. I bet you have heard it a thousand times but bringing your glucose into range will over time reduce it or eliminate it. I had nerve damage (gastroparesis, autonomic neuropathy) that affected my digestion and blood pressure as well as peripheral neuropathy on dx and over two years in range I got rid of these neuropathies. It was the hardest road I ever traveled. In my life I feel God present. I have asked many times during my two years of excruciating pain why I must go on to live and he did provide a reason. I also know that every day with this horrific disease is basically a bonus day because we use insulin. Do you have a CGM to get a grip on glucose control? Another thing I remember is that running cold water over my legs and feet would temporarily kill the hot spike type pain, even just for a moment. Hugs. nini

When i looked up the condition ( insulin neuritis ), I do notice that as things progress the pain seems to subside, however it can take weeks to months. Here is a good summary article.

https://www.neurologytimes.com/diabetes/treatment-induced-neuropathy-diabetes-underrecognized-rise

I wonder if the treatments for standard neuropathy. In my case I use NSAID’s along with Gabapenten which works well for me. Here is an article on medication options for neuropathy.

https://jaoa.org/article.aspx?articleid=2093122

Hopefully these resources will help explain and present some options.

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