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

Very good advice to see a Naturopath doctor. Twenty years ago my family doctor couldn’t find out what was wrong with me. Two days before we were to leave on a trip to Australia, a Naturopath doctor diagnosed food sensitivity. I have seen him periodically since.

Me toooo..........since i was in my 20's i think it started........ear infections, always gave antibiotics. i was not a swimmer, so that was ruled out. One day i asked the dr., WHY do i keep getting infections. He didn't know, said to see a specialist. Well, he didn't know either. that is when i saw my First alternative dr...........i had already read, read, and read some more, and figured out that it was a leaky gut, so something similar, ....and i was right. My Naturopath dr., said it was a build up from all the antibiotics over all those years, and that there was now mold , i forget exactly how he explained it. He treated the build up of all the antibiotics, it took 2 months of treatment, once a week for 2 months............but, i no longer have ear infections. I am 82, so his treatment from almost 30 yrs ago, worked. Alternative dr.s do like to find out What is the Cause.......Mds, altho we do need them for many problems, but they seem to just look at the symptoms, and find a pill for the symptoms..........never clearing up the Cause......Both types of dr.s are needed, i just with they could work together..........

I'm seeing a Neurologist. It turns out I have Monoclonal Gammopathy
My immune system is producing twice as many antibodies which are attacking my nervous system causing Nuropathy. You should see a Neurologist.

So truly sorry for what you are going through. The best advice I can give, Is to be your own ADVOCATE! 1st things first. Go find a pain management doctor. You cannot allow the pain to rule your life. There are many medications you can take to reduce PN pain. Once you’ve gotten that established the next thing would be looking for ways to get that weight off. I had bariatric surgery before PN and lost over 100lbs. Then a blood clot decided to alter my life in a NY second. Since you are now diabetic check in with your insurance se if they will pay for bariatric surgery. Mine did.
Or you may consider going the new route of weight loss which is injections of Zepbound, Ozempic and Wegovy. Which I currently take and I dropped 30lbs in 4weeks.
I wish I had more options for you, but remember. You know your body better than anyone, including doctors. Sometimes we have to scream from the mountain tops in order to be heard, especially by doctors. I just happen to be a straight shooter, so when my pain management doctor wanted to. prescribed me a med that I had tried, I said hey that’s not gonna work because I know my body, to me that’s like taking baby aspirin. So please I’m asking you as a doctor to listen to what I’m telling you because I’ve been at this for 8 yrs. I know which medication works and what doesn’t.
I wish you all the best, but please don’t be a victim. You have to advocate for yourself. I understand that there are good days and bad days and some are better than others. So when you have the energy, work on finding a pain doctor immediately I don’t know where you live, but you can certainly Google, pain, management, doctors, or pain management specialist, and get your ass in there for an appointment. I wish you all the best and please keep in touch if you made any progress.