Neuropathy advice

[jp619]

Hi everyone,

Can you help me please with some advice please? I'm a T1 diabetic (for 39 years) who has been diagnosed with peripheral neuropathy today ... it may be, but I have a small doubt.

About 4 weeks ago, I came down with a really bad neck, upper back and hip. Whilst suffering that, I developed tingling in one foot (which I attributed to something going on with my back, such as psiatica or a trapped nerve as it seemed to get worse when I tweaked my back). The doctor ran blood tests that all came back OK, and booked me in with a physio.

Since then the back pain has gone, but the foot tingling has remained. It's been like it now for about 2 and a half weeks. It's not been painful, just a tingling. At night it's worse, still not painful but feels like my whole leg is twitching in-time with my foot and wakes me up a few times. Whilst it was just one foot, I was hopeful that it was back-related. Then, a few days ago, I have developed some pain and tingling in the other foot, which has set my alarm bells ringing.

I saw the physio this week, who did a very brief 4 minutes worth of tests to test strength, and told me it wasn't anything to do with my back. He was a trainee, and it didn't seem particularly thorough. I mentioned a few things such as piriformis to the physio, but he told me that was fairly rare so not likely. He suggested I talked to my doctor about peripheral neuropathy as I'm diabetic, which I did today.

My doctor took the same stance - I have tingling, I am diabetic, therefore it's peripheral neuropathy. He said he couldn't think of anything it cold be, but conceeded that some other symptoms I have are "weird".

My concern is that it's not peripheral neuropathy, and that everyone is jumping to the same conclusion as I'm diabetic. I'm basing this on a few other weird things going on - I also have tingling in other parts of my body - arm, knee, wrists, lower back, buttocks and upper leg. I also spoke briefly to my diabetic nurse, and she said my blood sugars are good, and some of the symptoms sound like it's not PN, so to keep an open mind.

My question is, does this sound like the beginning of peripheral neuropathy? And where do I go from here? I'm (reluctantly) willing to go private, but what type of doctor do you think I should see? I've seen nerve testing mentoned on forums, but nothing liek that has been offered to me.

Any help is greatly appreciated. I'm quite worried at the moment. Thanks in advance.

 

[arkle]

Hi jp169. Been there etc, (T1, 64yrs) & through the incompetence of my general practice, I ended up with a below knee amputation. That was in 03. If you're on facebook, there is loads of info there. My then g.p. who was/is a senior partner, was made by the practice, (under my threat of legal action) to become their "diabetes specialist". She only works there 3 days a week b.t.w. & was made to attend a course that must have been several days long. Should I have the need to attend there, which really is a last resort. She avoids me like the plague, I wonder why ? Maybe she doesn't like me running rings around her, or for that matter the diabetes nurses, they've had...

 

[Antje77]

My concern is that it's not peripheral neuropathy, and that everyone is jumping to the same conclusion as I'm diabetic. I'm basing this on a few other weird things going on - I also have tingling in other parts of my body - arm, knee, wrists, lower back, buttocks and upper leg. I also spoke briefly to my diabetic nurse, and she said my blood sugars are good, and some of the symptoms sound like it's not PN, so to keep an open mind.

My question is, does this sound like the beginning of peripheral neuropathy? And where do I go from here? I'm (reluctantly) willing to go private, but what type of doctor do you think I should see? I've seen nerve testing mentoned on forums, but nothing liek that has been offered to me.

I don't know where you should go (health care system in my country is different from yours, for one) but that diabetes nurse sounds like a keeper.
I strongly believe diabetics are at more risk of having health issues overlooked because doctors are quick to blame things on the diabetes.

 

[jp619]

Thanks for your replies. Please keep them coming, I need advice!

Quick question. For those with peripheral neuropathy, do the symptoms I've descibed with tingling in other areas sound like the things you've experienced? I'm sitting here now, and the tingling on the back of my hamstrings is pretty strong, whereas I thought it was mainly lower legs and feet? And did yours come on quickly like mine?

Thanks in advance,

 

[EllieM]

Hi @jp619 is your diagnosis via your GP or a hospital endocrinologist? I'd trust the diagnosis of a diabetic complication far more from an endocrinologist than a GP.

I would hope that your GP could refer you to the correct hospital specialist....

 

[MrsA2]

@jp619 Have you recently changed what you eat in some way? I only ask because when i started going low carb (in fact very low carb initially) I had all sorts of odd sensations in my legs particularly for a few weeks. Sometimes it felt like cold water running up inside my legs! I eventually put it down to the sugar levels in my blood and my nerves reducing. I increased salt and magnesium and it all stopped after a few weeks. This was a full year before my attack of sciatica and that was real excruciating pain, very different

 

[Matt2023]

Hi jp619,

What you're experiencing does sound like peripheral neuropathy to me it is what I had and still have today, one thing that happened to me before the tickling and the uncontrolled feet and leg twitching movement was for quite a few years, I had very cold feet and had much trouble keeping them warm have you experienced anything like that yet? Of course it's all circulation related.

I have had peripheral neuropathy for about 7 to 8 years and it is still very manageable without medication, I do however have a life pro machine that vibrates the feet very quickly when the pain is just too annoying, but this mainly only happens during the evening when I am trying to get to sleep again something you mentioned in your original post and to why I think what you are describing is neuropathy.

I have no idea how they test for it. I had no test I just researched online and realized this is what I am suffering from. I hope this helps in some way to answering your question.

Thanks

Matt.

 

[jp619]

Thanks Matt and everyone,

That's really useful to know. I need to make sure I'm not just in denial, so am trying to be pragmatic as to whether I continue to seek other opinions from doctors, or accept where I am.

A couple of questions for you (and anyone).

1. Did you also get tingling elsewhere - hamstrings, buttocks, back, etc?

2. Also, the last few days I seem to be getting some tingling/burning in my hands as well. It happens especially after I've been lying face-down - really strange! Did others experiencing PN get this in their hands so quickly after developing PN in your feet?

Thanks in advance (again!).,

 

[Antje77]

Also, the last few days I seem to be getting some tingling/burning in my hands as well. It happens especially after I've been lying face-down

About 4 weeks ago, I came down with a really bad neck, upper back and hip. Whilst suffering that, I developed tingling in one foot (which I attributed to something going on with my back, such as psiatica or a trapped nerve as it seemed to get worse when I tweaked my back). The doctor ran blood tests that all came back OK, and booked me in with a physio.

I also have tingling in other parts of my body - arm, knee, wrists, lower back, buttocks and upper leg. I also spoke briefly to my diabetic nurse, and she said my blood sugars are good, and some of the symptoms sound like it's not PN

I saw the physio this week, who did a very brief 4 minutes worth of tests to test strength, and told me it wasn't anything to do with my back. He was a trainee, and it didn't seem particularly thorough.

If it were me, I'd see a physio again. A different one with more than 4 minutes of time.

 

[jp619]

Thinking about it, my body position seems to affect my symptoms quite a lot.

Being upright seems better. My foot/leg tingles much more when I sleep on one site than the other. Face down and my hands start to tingle/burn. And if I sit for a long time in the same position then the tingling gets much worse as well.

Is that normal with PN? Does body position usually affect how bad things get?

Really sorry for all these questions!

 

[Antje77]

Is that normal with PN? Does body position usually affect how bad things get?

No.

 

[jp619]

Interesting. And this may be a daft question, but does it hurt more, the more you do in the day, like how far you walk?

 

[filly]

Hi everyone,

Can you help me please with some advice please? I'm a T1 diabetic (39 years) who has been diagnosed with peripheral neuropathy today ... it may be, but I have a small doubt.

About 4 weeks ago, I came down with a really bad neck, upper back and hip. Whilst suffering that, I developed tingling in one foot (which I attributed to something going on with my back, such as psiatica or a trapped nerve as it seemed to get worse when I tweaked my back). The doctor ran blood tests that all came back OK, and booked me in with a physio.

Since then the back pain has gone, but the foot tingling has remained. It's been like it now for about 2 and a half weeks. It's not been painful, just a tingling. At night it's worse, still not painful but feels like my whole leg is twitching in-time with my foot and wakes me up a few times. Whilst it was just one foot, I was hopeful that it was back-related. Then, a few days ago, I have developed some pain and tingling in the other foot, which has set my alarm bells ringing.

I saw the physio this week, who did a very brief 4 minutes worth of tests to test strength, and told me it wasn't anything to do with my back. He was a trainee, and it didn't seem particularly thorough. I mentioned a few things such as piriformis to the physio, but he told me that was fairly rare so not likely. He suggested I talked to my doctor about peripheral neuropathy as I'm diabetic, which I did today.

My doctor took the same stance - I have tingling, I am diabetic, therefore it's peripheral neuropathy. He said he couldn't think of anything it cold be, but conceeded that some other symptoms I have are "weird".

My concern is that it's not peripheral neuropathy, and that everyone is jumping to the same conclusion as I'm diabetic. I'm basing this on a few other weird things going on - I also have tingling in other parts of my body - arm, knee, wrists, lower back, buttocks and upper leg. I also spoke briefly to my diabetic nurse, and she said my blood sugars are good, and some of the symptoms sound like it's not PN, so to keep an open mind.

My question is, does this sound like the beginning of peripheral neuropathy? And where do I go from here? I'm (reluctantly) willing to go private, but what type of doctor do you think I should see? I've seen nerve testing mentoned on forums, but nothing liek that has been offered to me.

Any help is greatly appreciated. I'm quite worried at the moment. Thanks in advance.

I have a Chiropractor. As I have nerve problems to with my spine. He is very good at knowing what is what. Getting second opinions is a very good idea when other parts of your body are possibly involved. Also have a good physio. I doubt all your symptoms with be totally to do with your Diabetes especially if you have had back and sciatica problems. The sciatic nerve runs the whole way down your leg and branches off into the calf, foot and toes. Anywhere along there you can get numbness, tingling, pins and needles. Do you get symptoms in just one leg, foot or both. Best of luck and hope you can find decent help.

 

[Matt2023]

Is that normal with PN? Does body position usually affect how bad things get?

For me personally it is definitely "Yes".

When I lay down to sleep for example that is when my legs and feet start to ache more and have involuntary movement in them. It does not matter in what position I am laying in, I still get far more pain from PN than in any other position.

When I am standing, I hardly have any issues if any with PN and the same with sitting down.

Obviously, everyone is different, so as others have suggested I would definitely go and get a second opinion.

As for my hands I have had very little problem with them so far.

Also, no harm in asking as many questions as you like, that is the idea of a forum is to ask questions, so don't feel the need to apologize.

Thanks

 

[jp619]

Thanks again for your informative answers.

During my research, I’ve found that statins may contribute to PN. I remember reading a post from someone who stopped using them when they got PN.

Has anyone else heard of this? I’ve been taking statins for a couple of years (although the doctor seemed quite flippant when he put me on them).

 

[Matt2023]

I have personally not heard of this and I got PN without taking Statins as I did not need them at the time. The last time I took statins was about 16 years ago and my PN started about 4 or 5 years ago.

Others might have heard differently though.

Thanks

 

[jp619]

Thanks guys.

One more quick question. I'm feeling the pain right now. What do you guys use for relief? Are there any pain pills that work? I've tried some CBD oil today and that seemed to make a difference. Anyone else have any thoughts?

 

[Matt2023]

For me personally, the pain is manageable without pain relief 95% of the time. The one thing I did invest in was a foot machine that vibrates your feet very fast and this has been proven to take the pain away and it does help.

PN is a daily thing and will be with you for the rest of your life, nerves cannot be healed once damaged, and you really do not want to be getting on any pain relief to start with, leave it until the pain is too much for you personally.

Thanks

 

[jp619]

Hi Matt,

Out of interest why do you say that about pain meds at an early stage?

My doctor has already put me on meds, an anti-depressant Duloxetine. Partly to help with my mental health, and partly because the same meds will help with pain.

I've gone from no pain 3 weeks ago to quite a significant and disruptive pain. I have a follow-up appointment with a different doctor on Wednesday. He was also really surprised that everything has happened so fast.

 

[Matt2023]

Hi Jp,

Of course, everyone is different, and I find the pain annoying buy manageable. It can be so extreme that it will keep me awake at night and will have to take a walk or use the above said machine for 15 minutes, I just personally do not feel that I need to resort to pain relief just yet. Everyone also has a different pain threshold.

I have been suffering from it for the past 4 years and I am no doctor but yours does seem to have come on very quickly. I hope your doctor can shed some light on the issue and to why that is the case.

Good luck.