I truly need help,

Hello @ranchguy221, Welcome to Connect. You are not alone with your struggle to find out what's going on and a lot of your story resonates with me although I don't have the pain just some numbness in my legs. I also got close to 330 pounds and took quite a long time and many lifestyle changes to get my weight under control. I'm now able to keep my weight below 220. I have idiopathic small fiber PN and have been pre-diabetic most of my life. I have had swelling in my legs but worse in my right leg and was diagnosed at Mayo Clinic Rochester with lymphedema. I have to wear compression socks which I don't like but it does help control the swelling.

Mayo Clinic has some information on Edema which sounds a lot like your symptoms - https://www.mayoclinic.org/diseases-conditions/edema/symptoms-causes/syc-20366493. There are also many different discussions on edema and swelling here on Connect that you might find helpful - https://connect.mayoclinic.org/search/?search=edema.

What really helped me get my weight under control was a lowering the amount of carbs I was eating along with intermittent fasting. It was hard for me at first but after a few weeks it became much easier. If you would like to learn more, we have a discussion on the topic:
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

You mentioned you have been researching your pain and it sounds a lot like neuropathy. Diabetes is one of the bigger causes of nerve damage and neuropathy and I always played it down when my doctor told me I was pre-diabetic. None of my doctors mentioned pre-diabetic is one of the signs of metabolic syndrome which I wished I would have known when my weight was at it's peak. The more research I did on the metabolic syndrome, the more sense it made to me of my neuropathy symptoms. Here's just one of many research papers:
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/

My lymphedema was diagnosed through some imaging and a lymphoscintigram. Have you had any tests to see if the swelling in the lower part of your body is due to the lymph system not helping to get rid of the excess fluids?

@ranchguy221
What specialist doctors have you seen and what official diagnoses have you received beyond diabetes? Have you been to an endocrinologist, cardiologist, vascular/vein specialist, neurologist, spine specialist, rheumatologist, immunologist and/or hematologist?

Have you had your thyroid checked? You may need to check for autoimmune disease and causes for inflammation. Working with a nutritionist/dietitian can help review your diet/supplements and symptoms. Diabetes can cause neuropathy and painful feet/legs and affect circulation. Diabetes and heart disease go together. It is really important you get your diabetes controlled and lose weight. There are medications that can help you do this. The longer you have elevated blood sugars, the more damage is done to heart, blood vessels, and nerves so prioritize you and your health above everything else now.

1. https://my.clevelandclinic.org/health/diseases/22903-onycholysis
2. https://www.medicalnewstoday.com/articles/319851
3. https://www.health.harvard.edu/a_to_z/onycholysis-a-to-z
4. https://www.mayoclinic.org/diseases-conditions/diabetes/diagnosis-treatment/drc-20371451
5. https://my.clevelandclinic.org/health/diseases/7104-diabetes
6. https://diabetes.org/living-with-diabetes/treatment-care

Hi there. I read your post and am wondering if you might have lymphedema. I say this because my legs swelled so much last June. I thought it was my heart and saw my cardiologist. He ran so many tests only to have them come back negative. My primary care doctor ran other tests and my legs still swelled. It was horrible. In Feb I saw my primary care doctor and she said she had another patient with similar swelling and was diagnosed with lymphedema. I was referred to the lymphedema clinic and was immediately wrapped in compression bandages. It took 6-8 weeks to have my legs go back to normal. I now wear compression garments and have to watch for more swelling. There is a lot more that goes into caring for my lymphedema—along with my neuropathy but when I saw your post, I thought I would share my experience. Hang in there.

When all else has failed.........i would do 2 things..........1. ask google a lot of questions, sometimes i get help, other times, its useless. Since you had the pain....before.....being diabetic, i would ask google something like........what can cause............them list your main problems, BUT add in, Kidneys good, not diabetic, all blood tests normal............you should get some type of answer. 2. since Dr.s have not been helpful, i would look for a Naturopath Dr. You will have to pay out of pocket, but, when you are in that much pain, and dr's don't know what to do, i would try an alternative dr......I've seen many, over the years, unfortunately, some i would never go see again, but several had different types of treatments that others do not.......When you check out their websites, look to see what type of services/treatments they offer. you want more than simply supplements and herbs......You are looking for something out of the ordinary, and some Naturopaths will have that. Also, a difference ....ND, means a Naturopathic Dr..........but.....MND means a Medical Naturopath Dr., who has more schooling, and knowledge. they can also write prescriptions for Drugs, like a regular MD....But, they try to keep patients off of drugs, and try to treat naturally. they are more costly, then an ND, but, you want the most knowledgable...............and look for one who has had their clinic for at least 10 years, it gives them more patients they had to work with.....If they want to run the same blood tests, that you already have done.........i think i would tell them no, you already have the results, and you think you need a different avenue to try to find an answer. YOU would probably have to pay for the blood tests out of your pocket, so, i wouldn't do that. If the Dr, is insistent, then i think i would just leave the office..........and try to find another one. It's not that their office charges are that expensive, but compared to dr.s on ins, where you pay very little, it is a heck of a lot of difference, My bills from a regular MD show charges of aprx $175 and higher, and a Naturopath Dr, is about the same price, some a little higher, the difference is there is no insurance that covers the charges........Plus, you most likely will see a Naturopath for an entire hour, not just 15-30 minutes that you see an MD for........hope this helps a little, anyway

Hello,
I'm really sorry for what you're going through. Peripheral neuropathy, if it's what you might have, is indeed a challenging condition. And there is definitely the diabetic neuropathy which enjoys most of the research and treatments of the medical field.
I deeply suggest to you to search for a good neurologist in your area and ask your doctor to refer you. Only neurologists or neuromuscular specialists can really deal with this. A primary doctor cannot.
Best of luck.
Take care and have a serene day,
gus