I'm Crying Right Now

It is interesting how you can live for so long believing something because a professional told you it was so. Since 2007, I have believed that I had poor circulation in my legs because a doctor diagnosed it as such. Today I found out that the circulation in both legs is "normal". But that is just the good news before the devastating...

I have lived since 2007 with excruciating pain in both legs whenever I do any physical activity. After I was diagnosed with poor circulation that year, I lost my health insurance. When I got health insurance again in 2013 I began a journey of getting all my health issues fixed. Type I diabetes + no health insurance = bad complications, and a lot of them.

It took several months and changing my primary doctor before I could get the leg pain issue looked at. Two weeks ago I had an ultrasound done on both my legs to check for circulation issues. Today I had an appointment to get those results.

The doctor told me that the results show that the circulation in both legs is normal.

"So this means all of my pain is from neuropathy?"

"Yes."

"I'm shocked."

"Why?"

"Because all these years I thought it was poor circulation. And also, because now there is no hope that the pain will go away."

"I'm sorry, but there is not much that can be done about this pain. The Gabapentin should help a little, but it won't help all of the pain. And keeping your blood-sugars under control and eating healthy is very important."

I almost started crying right there in front of him. "The pain is excruciating, and I have to walk so much. I walk all over town, I have to walk all day at work, I try to exercise for good health." I looked up at him. "I cry everyday because of the pain, and now I know there's nothing I can ever do about it."

"I'm sorry. But the good circulation is a very good sign." He tried futilely to cheer me up.

Hi Tiki,

I can just feel your pain from your post.

Your doctor is wrong.

There is something you can do about the pain. It can be reversed / improved!

It is is not a quick fix, and the pain may get worse before it gets better, but if you can normalize your blood sugars. Truly normalize them (using insulin, diet and exercise), the neuropathy is reversible. By normalize we mean keeping blood sugars between 80 - 140 all the time (and ideally 80-100 range). Getting your Hba1c below 6 and ideally in the mid to low 5s.

The pain will get worse before it gets better. This is because the recovery process of nerves is very painful. You should notice a change after about 6 months....

Given how important this is. Maybe you can start asking lots of questions here and looking at how you manage your diabetes to get this under control.

What I so often see is people not given the tools and knowledge they need to get great control.

So my questions:-

1. What meds are you on? What is your dosing regime?
2. Are you on pump or just daily injections.
3. What is your Hba1c.
4. Are you low carb?
5. Do you know your carb / insulin ratio?
6. Have you done basal testing to set your basal insulin right?

I would recommend the book "Diabetes Solutions" by Dr. Richard Bernstein. He gives lots of information about controlling diabetes and is a strong advocate for very low carb.

Hope this does help. It is great that your circulation is fine (for now). The neuropathy is NOT hopeless. There are others here who have successfully reversed / improved. You can search this / or even post a discussion on "Reversing Neuropathy" and I am sure you will get heaps of great feedback.

Thanks for the info. Although I do know a lot about diabetes and how to take care of myself (been type I since 1987), I was a rebellious child and am now suffering the consequences of a lifetime of not taking care of myself. But even though I know a lot, there's always more to learn! :)

Hi Tiki,
from your pictures you don't look so old. :)
Doesn't matter what has happened in the past, the only thing that matters is today and moving forward.
This Tu group is such a great resource.

I see from your page that you are also suffering from frequent and serious lows. Following low carb diet and learning how to accurately match insulin to diet and exercise is also going to help greatly with that.

Are you able to get a CGM? It may we well worth it if your insurance can cover it.

Reach out to people here they are a great, warm, sharing and caring bunch. And they will be able to help you.

Blessings, Tiki, as ever....I have fibromyalgia, as well as nerve damage in my left foot from a spider bite on my heel in 2006, arthritis in both knees and elbows. Chronic pain is real. Some docs respect that. Some don't. What JustLookin says is the "of course" for those who suffer chronic pain (please Justlookin, you are very right, BUT)...

When OTC pain relievers stopped doing anything for my pain, I worked with my PCP to develop a pain management system. I signed an "opiate contract" so I take 2 oxycodone/day and submit to a humiliating pee test every month to be sure I am not a junky on 2 oxy/day. But it is worth it. I take one early afternoon after my 60" workout and one near bedtime to help me ease into sleep pain free. Sleep is important and elusive for those with chronic pain.....

There are options, sweetie, and no one deserves chronic pain. No one.....xx000

There are plenty of other options besides gabapentin- I think B12 is helping me, I have what I believe is neuropathy pain and prolly also from damage to my veins from blood clots- tests showed the blood flow is impaired now and some of my veins are damaged. The pain from my dvt was really bad, even opiates barely helped that, the compression stockings helped more- my pain doc said the pain was due to the vessels and nerves rebuilding themselves etc. If your doctor thinks it is ok you could try compression stockings too. One of the vascular surgeons who treated me said it was ok for me to continue to wear them even with diabetes but he recommended the stockings instead of the socks because the socks cut off circulation at the knee.

People say marijuana helps their neuropathy pain as well as walking and normalizing bg too, although I think normalizing is problematic once a lot of damage is there maybe, I don't know because I have pain even with normalized bg.

There is nothing wrong with opiates if you need them too, I have had at times severe chronic pain from injuries which flairs and I still need them infrequently for that and for migraines. I am lucky that I have never become addicted to them, they make me very nautious if I take them for more than a day or two. I have seen a pain specialist for years and he doesn't make me do any tests to prove anything fortunately, that is so ridiculous Judith imo. I don't use them every day unless I'm in a flair up sometimes and even then very sparingly, but even if you do you shouldn't be required to do that. I have tried all the gabapentin type drugs for my pain too and all they do is make me feel psychotic now, although low dose elavil helped me I now believe it did a lot of harm and I wish I had just taken anti-inflammatory drugs and opiates instead. You can try drugs like valium too they can be helpful for this type of pain. Find a pain specialist who has experience in treating chronic severe pain. There are so many things you can do including tens, ice, heat and daily elevation of your legs.

Thanks guys. As some of you know, I have been getting my BG's under control over this past year. They went from being chronically high for many, many years (my A1c's as a child ranged from 9 to as high as 14!), to being mostly in the ideal range with some too low. They are staying more and more in the ideal range.

Justlookin, I'm 35 years old (thanks for complimenting that I look young! :D) It is sad that I have so very many health issues, but as I said, I was a VERY rebellious child. Yes, I do follow a low carb diet, and I balance diet, exercise, and medication. I'm not perfect, but am doing better everyday. I've known how to be a good diabetic all my life but have only used all my knowledge this past year. I do thank you for the help, especially that you mentioned the pain might get worse before it gets better. It has gotten worse just recently and I now wonder (and hope) that this is because I have been getting my BG's under so much better control and the nerves are healing.

My main problem right now is that I am having to wait to get an endocrinologist. I went several years with no health insurance and when I got it back last year I was dealing with so many health issues (heart surgery, multiple eye surgeries, etc.)right off the bat that getting an endocrinologist inadvertently took a back seat ( I was just so overwhelmed with everything else). It was my primary at the time (she sucked terribly) who put it on the back seat and I was so overwhelmed with all the medical issues going on that I just went along with it even though I knew better. There has now been a referral in for nearly a month but I have heard no word on it. I asked my new primary about it at this appointment and he said he would check on it and I should get a call very soon. Once I get in with the endo, then the ball should get rolling on better insulin (I'm currently very old school with Novolin N and R), a pump and CGM.

Again, thanks for all your help, guys. :)

I have some ideas for you, if any seem helpful:
-Call the Endo yourself. Sometimes referrals go to the black hole of faxes.
-There are other meds like Lyrica, Metanx, Cymbalta you can try if the gabapentin isn’t helping.
-There are several topical things to try, too. Compounding pharmacies make creams with pain meds in them that won’t give you the drowsy effects of pills. Some people find capsacin cream helpful after several days in a row if trying it (burns the first few days- be sure to wear gloves while applying it).
-Get your vitamin B12 and your iron/blood levels, and a thyroid panel checked. Vitamin B12 and/or anemia/low iron can cause significant neuropathy pain, especially in the legs.
-The Bernstein method is very different than most people’s idea of “low carb.” I haven’t tried it, but I’ve seen many people w T1 claim it has changed their lives in amazing ways.
-In the meanwhile I recently discovered essential oils, applied topically, can really, really reduce pain for me. Peppermint w lavender oil for headaches has significantly cut down on my ibuprofen use (hardly take it now!!). There are oil blends that help with neuropathy or muscle pain. I’ve had success w Nuerogen from Walgreen’s, Deep Blue (from doterra) + Marjoram +/- lavender oil for pain I have that is probably not diabetes related but is nerve pain from my head down to my foot and down my right arm. Have seen lots’o doctors. Hoping for answers soon.
-I use the oils and heating pads every day. For me, if I can keep the areas warm, the pain is wayyyyyy better.
If we can’t find answers by December, I’ll be trying Cymbalta that my PCP prescribed.
-I hope you find good doctors who are able to help you. If not: keep asking questions, ask for specific lab tests and treatments and you will get what you need.
-The above suggestion to use a CGM is a very great idea. Since you had to go without insurance for so long- there have been so many different discoveries about how to’manage’ T1. AccuChek Expert or a pump + Dexcom CGM is changing lives in amazing ways for an ever growing number of patients I work with.
-I have friends that have found that altering their diets make huge differences for them. 1 avoid e artificial sweeteners. 2 avoid gluten. They swear by it and it is easy to see they feel better!

I hope you find the energy to try new things, and try things in combination to see what helps you.
Hang in there and keep breathing deeply when you feel overwhelmed or discouraged. We are all here for you, rooting for you. You are one tough cookie and you can do this (even though it stinks)!!

Thank you for the suggestions. I'm making a list of everything people and websites are suggesting and will be trying many of them. :)

Tiki, I have peripheral neuropathy from Rheumatoid Arthritis. Lyrica didn't work for me--it caused additional problems, but Cymbalta and Topamax are lifesavers for me. I felt like I was walking on hot coals everyday allday. Hands and feet felt like they were being stuck by thousands of hot sewing needles. No more falls or dropping things due to numbness in my limbs or waking in the middle of the night in excruciating pain.

I agree with everyone else for you to work with your doctor to find the best plan for you. Mine was trial and error--lots of errors before we found the right combination.

I had PN in my feet … it was excruciating! Now I’m 100% pain free in my feet … and it didn’t take long. How did I do it?

1. Got my B/G under control.
2. Took Super Complex Vitamin B tablets (NatureMade)twice daily … morning and evening.
3. Additionally took one NatureMade Vitamin B-12 once daily in evening.
4. Used essential oil pain relief as needed … Reunion Intense Spot Relief and foot cream. Terrific!

I still take the vitamins and use the foot cream daily as I sure don’t want PN again!

5. I take Meriva-SR Curcumin twice daily for inflammation and Geneve Sylvestre herb (GNC)for B/G control.

I don’t eat a lot of carbs or sugar but other than that, I pretty well eat what I like sparingly.

Good Luck to All!

I'm a mess, it's obvious that I have peripheral neuropathy, but I also have most of the symptoms of autonomic neuropathy, and I have a couple symptoms of both radialoplexus and mononeuropathy.

Of course, the doctor hasn't confirmed anything but peripheral because that is the neuropathy of the symptoms I saw him for.

Do these suggestions you've all so kindly offered help all kinds of neuropathy? I'm mostly worried about the peripheral and autonomic because of the pain and numbness from the peripheral and the very worrisome problems I am having from the autonomic.

As I get my BG's under better and better control I notice fewer symptoms of the neuropathies, but they are definitely still there! I know it takes time, but I'm trying so hard to get well and it's just one health disaster after another. And all these problems keep sending me back to the thought's I had when I watched my dad die from diabetes...

"He took such good care of himself and still died...why should I even try?"