Don't know who to turn to....

By ANYSA728 Latest Reply 2017-11-16 20:40:57 -0600
Started 2012-06-19 14:47:24 -0500

Hi. I’m new here and to the disease. I have problem and the biggest part of that problem is not knowing what to do about it. Its making me feel alone and helpless. And I hate that feeling. I don’t want this to be too long but to digress for a moment before I ask my question, let me explain who I am. I have been a runner since 2009. I run marathons and other races. I’m not too serious about it but I enjoy it. I eat well. I do eat candy (not a whole bag!) and Quarter Pounders (like once or month or two). I do drink but only occasionally and socially. On the whole I’ve been super healthy and conscious of being healthy. For the past year I’ve had bizarre skin infections (in grown hair, cut, pimple and once a clothing abrasion). I’ve had eye sight issues but I thought since I turned 40 and use a computer 9-5 40 days a week; I just needed glasses. I thought the gallons of water I drank each day meant I was dehydrated and well, no one drinks enough water & now I was. Leg pains, unexplained nausea in the morning when I got to work. I even had surgery 2 years ago and the incision got infected and we went through all these antibiotics to finally heal it. My point is, I’ve probably had diabetes for 2 + years but was only diagnosed March 2012. Bloodsugars are way down from the 600 I was at when I almost slipped into a coma (got an infection on my head!). I’m at about 100-200 (mostly lower with a few spikes and a few drops below 70). My last A1C was like 9 so Im in the right direction. Problem is leg pain. I had occaisional pain right before the diagnosis, so may since January 2012. Now my life is in shambles. Can’t sleep at all the pain is unbearable. Its starting to continue hurting really bad in the morning. I cant run (heck I can’t sleep!). I can’t do anything! I work at a University that is part of a major hospital. I see an Endocrinologist’s nurse and my primary care is a PA. Not that I have anything against these position (just sayin). Both have been pushing Cymbalta and the other Neurontin (?). NO luck at all. Primary told me to take melatonin and a benedryl to sleep. NO luck. Pain is getting worse. I hate going to work mostly because I have to get up and work through the pain. I do work through it, but I don’t like it. I’m not my normally bubbly self. I’m getting depressed and I feel frantic. I just need some relief. Endo nurse said I need to start with my primary care dr (which there isn’t). My primary PA actually thought he could treat my diabetes himself! He started me out on 10 units of Lantus a night and prescribed a meter. Didn’t tell me how to use or when or ANYthing! This guy is a joke! I mean I trust him to treat the flu or a sprained ankle but not my disease. No one’s tested me for neuropathy I just asked my endo nurse to give me a referral to a neuromuscular doctor right here at our university. She said no – you should start with your primary to find out what is causing the pain. And my primary is out of town again!!! The last time I called he was out of town and his nurse said to go to the ER if it was that bad. I make a lot of money. I have great insurance. But I feel I’m getting the worse care. I don’t know what to do or who to talk to. Please…yall seem to know whats going on. Please, please tell me what to do. Yall are my last hope!

22 replies

Armourer 2012-06-29 13:52:22 -0500 Report

I have terrible leg cramps but the doc had me take an OTC of magnesium, zinc, & calcium pill once a day. This has cut down on the cramps greatly! I also recommend you go to a diabetes educator dietitian. Mine was better about helping my diabetes then the endo I was seeing.

Set apart
Set apart 2012-06-24 08:39:08 -0500 Report

Hello and welcome to DC, first of all I'd like to say that if your team isn't working for you find one that does. This person that keeps sending you to your PCP is also nutty. Your A1c of 9 is also too high. They have told you that right? Please take care and get some answers from those who care. We care!

TsalagiLenape 2012-06-24 07:56:56 -0500 Report

Well as an athlete who runs your legs are going to get the cramps and etc aka lots of pain…I have found out much to my relief that its due to the fact my legs are toned. You can actually see definition of the muscles, that I needed B12 then went and started using a Complex B vitamin. This helps with the leg cramps, pain and etc. It also helps since Metformin takes away your B vitamins. I found that out just recently. So If I was you, and you arent getting any answers go to the E.R. let them know how "helpful" your Primary is. But then start taking some B complex vitamins. If you can get an endo, or a diabetic educator they usually have more insight into your problems. Hope this helps. Hugs

Anonymous 2012-06-23 01:42:05 -0500 Report

When you reply to a post, hit the reply UNDER the person's name so it stays in context. It goes with the right person. When you hit the "add your reply" it is as if another member is newly posting. When done the correct way, it helps to read smooth. You may not have known that, so thought the help needed.

arsmithsr 2012-06-21 09:58:03 -0500 Report

I have a recipe that has worked for other diabetics for the nerve Pain this is also good for a general type first aid ointment. You take 2 cups of Olive oil heat it on low add one part saint johns wort (this is the herb that will help with the nerve pain) 1 part calendula flowers(anti septic) 1 part plaintian this probably grows in your yard it helps healing. Cook this on low for about 4 to 6 hours. To make an ointment out of this add 1 ounce of beeswax for every cup of finished oil. So if you have one cup of oil when you have strained out the herbs use one once of beeswax. Let it cool and you have an ointment. You can also add some of the essential oils like peppermint for the icy hot effect or for more of a heling and anti bioitic use teatree oil or lavender oil. This has ben used successfully by Diabetics for the nueropathy and is something you can make yourself.

CJ55 2012-06-21 03:39:23 -0500 Report

hello.. I myself have suffered from leg pain, muscle cramps, and also my calves and feet/toes "freezing" up as I call it. The pain is unbearable. I aslo had blurred vision off and on. I truly believe this was all from high blood sugars. 400 - high (which means over 600) i had been like that for 8-10 months. I could not get my numbers down with diet or different meds. My PA was my primary Doctor who was treating me. As of 4 weeks ago, i started seeing an endocrinologist. She took me off Amaryl, Metformin, Lantus and Humolog. I am now ONLY taking U -500 insulin and it has worked wonders for me. No more cramping of anything. I was so grateful that pain subsided. My bs are now inbetween 75 -160. Good luck!!! It's a tough road. I am a newbie on here as of 2 days ago. I love this site. Very nice people with kind words of encouragement and understanding.

Anonymous 2017-11-16 20:40:57 -0600 Report

Were you experiencing lows with your insulin or did you have dumping syndrome where your sugar dropped really fast? I'm trying to figure out why I get the muscle cramps… I don't take insulin often, I have an insulin secreting tumor that causes hypoglycemia, but I get muscle cramps every time I eat more than 12 carbs or any kind of concentrated sugars… I also am getting autonomic dysfunction… I have neuropathy pretty bad… I'm certain that's from my sugars fluctuating… My sugar drops really fast, I feel like my heart is pounding and I get nauseous and just pray for sleep and then I wake up with the monster cramps from hell… I have to eat… I was able to drink protein drinks with 20g protein and 8g carbs, but I'm having issues with milk now and any sort of lactose… If anyone has any info, forward it… Thank you!

Mimiewal 2012-06-20 22:45:48 -0500 Report

I too suffer from the leg pains that you are talking about. I haven't found out how to get rid of them completely but my doctor prescribed me Gapadine, in addition to this I started taking b12 and I have noticed a change in the pain it is less often. This might be something you can discuss with ur doctor to see if it's good for u.

sundown420 2012-06-20 21:07:00 -0500 Report

Hi, so sorry to hear about your leg pains. I work for a family practice doctor that is wonderful. I was diagnosed in 2007. I too, had the leg pains just as you described and the eyesight trouble. It took almost 1 year for the eyes to return to normal vision. It was blurry vision and then it would be clear. It flucuated back and forth for a good six months. As for the leg pain, it was explained to me from having such high blood sugars for a long period of time and now trying to get them normal. That too, took me almost a year to get under control. The doctor's wife has diabetes also and we compare symptoms together. When we eat a meal that is high in carbs, we both have pains that feel like lightning bolts and also the charlie horse's in the thigh's are killer. I know exactly how you feel. it will get better with time. I know it is hard, but if you can try and keep your reading below 150 for a few days to see if it helps the pain that might be your answer. I know everyone is different, but when I have stuff I know i shouldn't and my sugar spikes I can count on having the leg pains and charlie horse's at night. The neurontin really does help alot of people. I would stay away from the cymbalta as it tends to put weight on most people. LOL What you really need to do is find other's in your area that are diabetic's and ask who they see for medical help or you might want to try your local hospital and see about their diabetic program. They have helped alot of people. Also your insurance company should have a diabetic program and can get you to the right doctor's in your area to help you. It all will ease up in time. I hope I have helped a little bit. Please let me know how you are doing later. I can try and help you in any way I can. I agree with forsakes alive, you need to get an older family practice doctor and start from there. Take care!

forsakes alive
forsakes alive 2012-06-20 20:21:58 -0500 Report

The only thoughts I have is to fire your med staff and get some1 a little older that has the knowledge to treat you properly,ask questions,about anything and everything,write them down if questions arrise after the fact of seeing a Doc.Also dont forget this,they work for you,its not the other way around. I say these things do to dealing with Dr.'s for a long time,and I have had many,some good and the rest werent worth even talking about or referring another to.

Type1Lou 2012-06-20 13:25:41 -0500 Report

PCP's are not the best option for treatment of diabetes. I never felt comfortable with my PCP's handling of my diabetes and finally initiated a request for him to approve a referral to an endo. I feel it literally saved my life. Having access to a University hospital should provide you with access to a board-certified endocrinologist who specializes in diabetes care. Sounds to me that the endo nurse you're seeing is brushing off your concerns. Like red flower lady noted, they work for you. Step one: Find an endo who you are comfortable with so you can begin to take better control of your condition. Once you have it under control, you'll begin to feel better and be able to fend off any complications that might impede your activities. Check out the news article about Team Wild at It's a group of diabetic women who ran in Wisconsin's Ironman triathlon in 2011. Well-controlled diabetes need not limit us. Best wishes!

Irish1951 2012-06-20 13:08:04 -0500 Report

Sorry you have joined our community but also I hope you see that you have come to the right place for help and support. As many of the others have said, learn all you can and know that it will take time. I have found that I often have more knowledge that some in the medical field ( thanks in no small pRt to this site). Many Dr's will down play some of the advice you will get with regards to nutrition and supplements. Only you can know for sure if they work for you.

One common thing you can see from these posts is that you must control your treatment, the Dr's, nurses, nutritionists, etc work for you. You will hear repeatedly that you need to assemble your healthcare team. The emphasis is on "you". You will learn your body and what works better than anyone else. Your team has to listen to you and what you say and need. If they don't, fond someone who will.

We have been taught that the Dr's know best and we should listen to them. That is hard to break but it is a must.

red flower lady
red flower lady 2012-06-20 00:38:00 -0500 Report

Hello and welcome. I'm so sorry you are new to this and not getting all the info and care you should have been given from the start. I would suggest you see an Endocrinologist and not the nurse! You mention having great insurance, so you may not need a referral to see one. That would let you by pass your primary care dr. But, if you must go to the primary first, then ask him to referr you to an endo as it is what is done all the time. If he has an attitude then explain you are not happy with dealing with his PA for this and tha he is too hard to see. REMEMBER, you pay him to help you and if he says no, then change primary dr. Endos are trained to care for diabetes and to help you with the proper medicine and devices if any that you may need, as well as send you to a nutritionist to learn how to count carbs, portion control and determine a meal plan for your life style, recipes, etc. You will get alot of good info from this. Also, an endo will help determine what is wrong with your leg and send you for proper test/drs as they know all the complications that can happen with diabetes. They deal with this daily. The affiliated hospital probably has classes as well.

It is really important to have a good team so that you can have the support and care you need. That being said, it may take a few changes to find the ones that you feel comfortable with. Write down any questions you have and take them with you. Also, keep track of your blood glucose numbers and what you ate so that they can see your pattern and help make changes. If you haven't learned how to work your meter, go to it's website as they usually have videos. The pharmacist can also help you and we have video's on this site on the left hand side of the page with all kinds of info.

Once you get your bg under control your leg pain may go away as it does for so many diabetics. Also, don't forget to get the exercise in to help balance out your diabetic plan, it is important. It can be overwhelming at first, but you'll get the hang of this and get in a new lifestyle routine and be happier.

Good luck, and know that we are here for any help you need to be successful in controling diabetes:)

MAYS 2012-06-19 22:09:09 -0500 Report

Here is the best advice that I can give you…stay focused and productive in managing your diabetes…how so?

There is so much to learn, so many people to see and so much to do.
You didn't develope diabetes overnight and I assure you that you will not manage it in a heart beat, but as time goes own you will become better and more efficient at managing your diabetes.

Assemble your medical care team, ask many, many qestions, keep up with the newest technology and medical advances, let the proven methods and medications of old help you manage your diabetes.

The more you learn about diabetes, and how it affects you the better off you will be.
The family members here at Diabetic Connect are the greatest support group ever and I truly mean that, everyone here is so supportive, you will wonder how did you ever get along with dealing with diabetes without this wonderful family!

I like to give facts, not advice.
Don't be afraid to deal with your diabetes, it can be controlled.
Talk to your doctors and specialist, give the medications and treatments a reasonable amount of time to produce (or not too) results, document your treatments and findings so that you will have something to base your arguements on if necessary.

It's not easy managing diabetes but it is doable…
If I can help you in any type of way, please feel free to contact me, or post a discussion and I will respond.
"Welcome" to the family!


Tweatypie 2012-06-19 16:49:34 -0500 Report

Oh my…leg pain is so vague…is it in your joints or is it at the insertion points of your tendons and ligaments or is it in your muscles? Running can do damage especially if it is overdone. I have been diabetic Type 1 since 1965. I could write a book about what I have encountered by being a diabetic and also a nurse. I would love to know more about your situation so if I can help I would. Massage therapy (if done properly) can be a blessing but you have to know who can do the job. But first you need to address where exactly the pain is. I really would love to help you any way I can. I was put on this earth to help people and I want to help you! I can't of course guarentee you that I can help but really willing to try.

ANYSA728 2012-06-19 21:04:30 -0500 Report

thanks tweaty pie. Like Old Biker says..everyone is different and I guess doctors are just "practicing" medicine. Sometimes yall give me hope sometimes I think heck just take them off. I'd probably do well in the wheelchair sports. (joking!!!) Um…the pain is waist down mostly knees to ankles. Dull pain with what were little lightning bolts but now feel more like baby charlie horses. Seems like pain is pretty focused on the joints sometimes. Sharp lightning bolts in my toes at times. and I get baby charlie horses in my thighs. Pain is mostly at night in bed but starts when I sit in our sectional for the 3 hours of conscious time I have with my dh before we go to sleep. At night…magnify it all a least 10xs. In the morning, my leg muscles are super super tight and sore. I've gotten up early for hot baths for relief. Its been bad enough that I have gone consecutive nights with 2-3 hours of sleep. The pain and lack of sleep are combining to really make me question…I don't know what. I don't see any options. I don't see that there's anyone to hear me or help me. I just looked at doctors in my area that specialize in diabetes and there is one!!! And no one likes him! Main concern is that he is not have a good bedside manner or questions or listening, etc. I mean, this is the only thing I DO need. Now I'm really disillusioned.

re1ndeer 2012-06-19 16:30:44 -0500 Report

Are you sure it may be neruopathy? It's possible you may have restless leg sydrome. Is your pain mostly at night? or is your pain all day long? Are you on any other medications, sometimes other medications have adverse side effects that cause pain.

If your primary doctor can't help you, find another doctor who will. You have the right to fire your doctor, if he/she is not helpping you. Does your primary doctor have someone on staff who fills in when gone? if so, go see that doctor.

You need to get your concerns answered.

Nick1962 2012-06-19 16:08:50 -0500 Report

Anysa, there's a lot here to respond to and some of it will be best addressed by others here in the group. As for the pain, I'm a firm believer in chiropractic care. It has eleviated pain issues for me my primary physician and specialists couldn't even identify the cause of. Rarely wil a doctor recommend chiropractic, but as inexpesnive as the treatment is, and the overall effects it can have on your health and attitude, in my book it pays for itself. I could go on, but won't unless you have questions. i think it could get you back and "bubbly" in short order.
Otherwise, you seem to be doing everything right judging by your numbers.