Hi,
What do people do for pain and swelling?
I am in my early 20s and was diagnosed with TD1 4 years ago. I am having pretty bad leg pain and some swelling in my feet and calves lately. I am on my feet a fair bit/vertical and don’t want to get spider veins too
Any help would be appreciated
Mmg, have you spoken to your endocrinologist? There is a prescription for diabetic nerve pain that kind of sounds like what you’re experiencing.
Swelling woud have me a little concerned so I strongly suggest that you call or see your Dr as soon as possible.
Good luck.
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Hi jjc,
Thanks for your advice!
I’m pretty bad and don’t go to see anyone usually and self manage. However I’ve got a grip with myself and i’ve just picked a new doctor and had all my bloods done and will start consulting with specialists.
I think part of the problem is also lack of rest, I am on the go for about 12-15 hours most days, so will also add in some exercise, change of diet, stretching and leg elevation.
Thanks again 
I used to work as a server and bartender and had similar problems with pain in my calves. I took Tylenol and rested as much as I could. And that seemed to help.
The swelling and leg pain does sound a bit like diabetic nerve pain as t1djjc said, so definitely see your endocrinologist as soon as you can
Hi Dani,
Thanks for your reply!
It seems to be pretty bad after long days on my feet, which atm is most days. I’ll mention that to my doctors.
I’m thinking it may be slightly poor circulation too, but I’m sure that semi normal after being vertical so much. I’ll definitely discuss it with them.
Have you also experienced loss of appetite?
Thanks
NOt when I was serving, but when I am stressed, I totally loose my appetite. Lately that’s been a lot. I just make sure I have my kit with me: tester, glucose tabs and insulin pens (don’t have a pump yet but working on that) so I can adjust as needed. I try to keep a log of what I am doing, my stress and anxiety level, food, insulin doses and sugar levels. But that can be hard when your really busy at work.
I’ve been Type 1 for 39 years, since I was about a year old. Luckily my mom was a nurse so I think that helped me a lot. I’ve learned to pay attention to my body and get help when it tells me something is wrong - although lately I haven’t been doing that and got really sick. One thing a lot of non-diabetics don’t understand is that we always have to aware of our bodies. It can be overwhelming at times. Try and set up a regimen for yourself. And if it needs to be altered, alter it. You’ll find that the longer you work at it the easier it will become especially with help from your doctor. Hope this helps you at least a little.
Hi G @mmg,
For your leg pain and swelling, have you tried wearing compression stockings and compression pantyhose? I found these two wearable items wonderful and better than going the drug route; I always wear knee high compression now even at the beach - I’m tanned all over my body except below my knees.
During the depression of the 1970’s I worked as a house painter and paperhanger which meant I was climbing and on ladders for 10 hours six days a week. I got the compression hose tip from a [non-diabetic] surgeon customer of mine who told me he would never enter the surgery theater without first putting on his compression legwear - a heart-lung transplant would keep him on his feet for 6 to 12 hours.
Self management can be really difficult and unfortunately we’re not trained to notice subtle changes in our bodies and symptoms so it can be dangerous to self manage sometimes.
With what you described blood work is the first thing that I would have suggested so good for you. Also know you are not alone with lack of rest. If I get 2 - 3 full hours of sleep a night that’s a lot. I feel like I I walk around in a haze almost everyday.
If I was able to choose 1 thing that would not be an issue moving forward it would be to be able to sleep for 4 to 6 hours.
I hope you get it figured out. Hang in there!!
Hi Dani,
Thank again for your reply,
Wow that’s a long time to have t1d, thank goodness for your mum, I’m pleased that you had her to help you when you were little.
Thanks for your tips! I’m trying to get everything done to establish a routine, I find it best to make to do lists, then once I have those things done I can establish my routine, I’m almost ready for one, since my daily routine is becoming more regular.
I’m convincing myself to eat, the past few days, so that I am able to function better and have less brain fog. Only a handful of people in my life know that I have t1d and I don’t see them often, with the exception of my partner outside work hours and I have just opened up a cafe, so I just have to suck it up and continue with positive and good thinking energy! I know I can do it and I believe we all can! Well done for keeping a diary and keeping track, it’s not easily done! Hope your health is improving this New Year
Hi Dennis,
Thanks for your message! I haven’t tried them, but did think about it the other day. I can’t really wear them during the daytime as i wear a skirt to work as its hot here in Australia. I might get some to wear at night when I’m home and definitely in winter!
Thanks
Hi Jjc,
Thanks for another reply!
Yes that’s right, I am more self aware now than ever and am slowly getting to know my body more, but I’m not equipped with enough knowledge yet to help fix it, so I suppose that’s the ultimate goal!
Wow really that’s all!? How do you manage to function? Do you take any herbal or other supplements to help?
I tend to sleep ok, but rarely feel like I’m sleeping, it feels sometimes like I wake up a few times, or I close my eyes and then it’s time to wake up.
I have only tried it once or twice, but felt rested through a YouTube audio relaxation hypnosis. I’ve also heard that guided relaxation meditation is good too, can even be on your phone. I don’t tend to have much time for this, but will try to fit it in more and see if it helps. This may be something new for you to try too? Thanks
Hi JJC @t1djjc,
I must very strongly disagree with you assessment about “self management”. During my more than 60 years of living with diabetes I’ve mostly managed on my own; we must train ourselves to recognize all, or most, changes in our bodies, our symptoms and know what we should be doing; we must, as a doctor who was then President of The American Medical Society told me when he diagnosed my diabetes, train ourselves to be our own best doctor. There isn’t a doctor, or group of doctors, who know my body as well as I know myself - and that is a must for all of us.
Hi Dennis,
Thanks for your response!
Which part do you disagree with? I am all for self managing, just saying and maybe doubting that I’m probably not knowledgeable enough yet in response to jjc’s reply. In saying that I am probably doing an alright job. Just I’m currently self managing and have been for 4 years. I’m not sure how much doctors can help me other than suggesting dosage for insulin, diet or prescribing drugs? I was put off going after the first few visits when I didn’t feel like they were offering me any knowledge or advice. So I completely agree with you!! As at the end of the day we are in control of our actions, eating and exercise. I definitely need to do some more research and reading to expand my knowledge and apply myself if I want to manage it effectively as possible and my mind is slowly becoming ready to take charge, as at the end of the day I can’t be forced or told these things, I have to want to make a change for it to work.
Congratulations to you in being brave enough to self manage, I feel better to know that there are others out there doing it. I’m definitely feeling encouraged and am looking forward to taking these next big steps
May I ask what your tips are for self managing? Thanks again!
Hi G @mmg,
My first tips are be cautious making changes in your insulin dosing; be smart by considering cause and effect; do not be arrogant to the point where you believe that you are invincible - I have a standing appointment with a knowledgeable endocrinologist every three months to discuss my management and she orders any necessary testing, I do respect doctors [some] and in the last dozen years I’ve begun seeing a few specialists who attend to this 77 year old body that is wearing out.
You said earlier that you will soon be seeing a new doctor - be open to what this doctor has to sar and share with her/him your thoughts “self management” and ask for the doctors support and assistance. The principal argument is that you are with your body all day, every day and the doctor is only with you for minutes every few months. We could discuss the science of insulin dose management and most importantly how to avoid “insulin stacking”.
Another thought from an earlier posting, do not be afraid to eat - eat an appropriate, well balanced diet every day; your body needs fuel to function, and if you eat without over eating you will not tire out easily and probably sleep better too. I eat more than 200 grams of carbohydrate every day and maintain a BMI of 20.05.
Hi Dennis,
Thanks again for your reply!
I am getting better at understanding my body and the numbers. I inject based on what the number was and what I’m eating and then going to do and I seem to get my version of a good post reading most of the time. I’ve also discovered that I’m pretty sensitive to insulin at times e.g when I exercise regularly and sometimes depending on what I eat too obviously, so I’m going to make an effort to try and exercise more as it brings my numbers down
I’m pretty wary of doctors, it just seems to be whatever is a quick fix. i’ll be asking my new one for a reccommendation the hospital endocrinologist and maybe even another gp who has experience in this department. I’m yet to find a good doctor, but but here’s hoping! I hope in the next few years to get my body ready for a baby too, which would be an amazing blessing if I can, but also a pretty daunting venture itself and I suppose I’ll have to start going to more doctors too haha. So I plan to help and educate myself first, learning more about this and my body first before having a baby.
I have actually eaten well today for the first time in a while, it’s more the lack of appetite and it not being appealing whatsoever which is more difficult.
The leg discomfort and tiredness is still looming, but that’s what I should expect when all my hormones are changing after coming off the pill recently, so all in good time I suppose.
Thankyou for sharing your wisdom again, it sounds like you are doing pretty well on your guided self management journey and I’m sure I can have great success with mine too
Dennis,
You misunderstood or I wasn’t clear enough about the definition of self management. Based on your comment I self manage as well but mmg mentioned they have not been going to see a doctor and you know what, I completely disagree with you if you think that’s OK.
You see your doctor every 3 months as do I but unless I have a major issue I don’t call or email my endocrinologist but I do go for blood work because where one autoimmune diseases resides others tend to follow. Myself, I’m not only dealing with T1D but also Hashimotos (sp?), hypothyroidism and low testosterone. If I didn’t see my doctor every 3 months that would be not only reckless but potentially deadly. So that’s what I am talking about when I say I don’t self manage but if you want to argue over semantics it’s not worth my time to even respond any longer.
You also have 60 years of this, mmg has what, 4 years and I’m coming up on 2 years this month so there is a slight difference in experience levels here too.
Mmg,
What state do you live in? I’m assuming you live in the US but if not I apologize.
Hi Jjc,
That’s OK, i’m in Queensland Australia.
I couldn’t find any online groups over here and don’t want to meet up with people for support groups.
You both have valid points, I have not been to any doctors for a while and yes that may be reckless as I’m still getting to learn about my body and t1d.
Should I be asking the doctor for any more tests? I asked for them to check iron, b12 and they did hba1c/ 3 monthly checks.
I’m going on Thursday to the doctor to find out my results.
Thankyou both for your input
mmg, hopefully by now you got your blood tests back?
As far as support, I find the Beyond Type 1 group of people to be amazing. There are T1Ds from all over the world and a lot from Australia. Check out this link I think you would find it helpful and much easier to navigate than most.
Hope to see you there!!!