Proximal neuropathy or diabetic amyotrophy

[HSSS]

For years I’ve had pain and aches in my right hip/buttock on and off. It started again with a vengeance a few months before I was diagnosed at 55mmol type 2. Since diagnosis over 18months age I’ve had fairly good control and been in the low 40’s with lchf. The best way I can describe it is a constant ache, sometimes escalating to a toothache like pain or even burning. I get some mild numbness from time to time spreading down the leg from the groin. Foot sensation is and always has been fine. I’ve seen orthopaedics who comment my muscles are weak and dysfunctional but no explanation why. I’ve had a year of physio and now been discharged despite it not resolving. I’ve tried amitriptyline with some relief from the worst of the burning pain but it doesn’t help the constant ache. I’ve just seen neurology who have discharged me after mri of hip and back are normal with no explanation or treatment other than it’s nothing sinister. No nerve testing done. It’s been worse than it currently is (limiting activities quite a lot at some points) but never goes away. Neuropathy hasn’t ever been raised as a cause. There doesn’t appear anywhere left in the nhs to turn so I’m turning to dr internet.

Anyone know if this fits the condition in the title or have ideas how I can help this along - as if it is this it should be time limiting. Other than keeping control of bgl and trying to keep the movement and strength going is there anything else that could help? Of course it may well be nothing to do with diabetes but I’m fed up of it. The only threads I can find are ancient.

@donnellysdogs I’ve come across an old post of yours in regards to this condition. I’m wondering if you have words of wisdom or signposts for further help.

 

[Listlad]

Just through lifetime experiences etc I would have thought back problems / nerves. But that is just my own limited thoughts on it.

If it were neuropathy and diabetes, would it not be the same for each butt cheek? Just me thinking out loud.

And.. doesn’t it work from the feet upwards?

 

[Rachox]

I Dr Googled Diabetic Amyotrophy (as you do!) and found this article, I expect you have already found it too:
https://patient.info/diabetes/diabetes-mellitus-leaflet/diabetic-amyotrophy
The asymmetrical description of symptoms and the fact that lower legs and feet aren’t necessarily affected does very much fit your symptoms. Have you actually mentioned this condition to any of your medical team?

 

[HSSS]

I Dr Googled Diabetic Amyotrophy (as you do!) and found this article, I expect you have already found it too:
https://patient.info/diabetes/diabetes-mellitus-leaflet/diabetic-amyotrophy
The asymmetrical description of symptoms and the fact that lower legs and feet aren’t necessarily affected does very much fit your symptoms. Have you actually mentioned this condition to any of your medical team?

Yep I’ve found that one thanks. I haven’t mentioned it as I’ve only just found out about it having assumed, as above, that it starts at the feet not the backside! I’ve also been discharged from everyone so it’s back to the start with the gp.

It does seem that other than keep bgl control and exercise there’s not a lot to be done anyway - other than the appropriate nerve painkillers as required, which I already have. Not sure I can be bothered to trawl through the system again (another year probably!) only to be told what I already know at this point. Hence asking on here.

Bit like low carb doesn’t get mentioned by a lot of drs I’m hoping there’s some secret treatment that spreads up neuropathy healing that I don’t yet know about.

 

[Brunneria]

Bit like low carb doesn’t get mentioned by a lot of drs I’m hoping there’s some secret treatment that spreads up neuropathy healing that I don’t yet know about.

That’ll be keeping bg as low as possible, and excellent nutrition (sorry, that comment was probably annoying and told you nothing that you don’t already know!).
Have you seen Dr Bernstein’s you tube video on healing neuropathy by tight bg control?

I am sorry you are going through this. Constant pain is so wearing, and it affects so many aspects of life.

 

[HSSS]

Something about some supplement is ringing a bell r-ala or something? Anyone ?

 

[Rachox]

Something about some supplement is ringing a bell r-ala or something? Anyone ?

I think @Bluetit1802 uses/has used R-ala

 

[Brunneria]

Yes r-ala.
I was trying to think of the name last night, and all I could remember (brain already catching zzzzs) was Q10 - but that is for statin recovery.

 

[teasytux]

Hello Hsss,

I'm sorry to hear about your symptoms & pain

I'm a type 1 Diabetic, since the age of 2, 46 years with. Your descriptions affecting your hip, thigh, buttock, leg areas are spot on to what began in mine in 1995 to this day. I have still the most awful burning, aching pain in my legs. In the beginning years, the Dr's tested me for just about everything with unsuccessful diagnosis. I was in so much pain & getting nowhere, tried umpteen drugs & drug combinations with poor results. Luckily, I was directed to a fantastic diabetes consultant. At that time, I best describe his knowledge as multi volume encyclopedias! To cut a long story short, he arranged nerve conduction tests & chronic Diabetic Neuropathy was diagnosed in my legs.

I think, although you're type 2, you should ask for a nerve conduction test. The test would determine if you have Diabetic Neuropathy or not. I personally have had another nerve conduction test, last year, which confirmed I still have Diabetic Neuropathy in my legs & feet. I have had difficulties with finding pain relief since the beginning. With Dr's help, after years of failed drug combinations & pain clinic, we found that Mst, Phenytoin & Duloxetine combination help to some degree with my neuropathic pain. Unfortunately, I have Peripheral & Autonomic Neuropathy, Retinopathy, Cheiropathy & Gastroparesis.

I really hope you can get some help, I know just how awful things are with the issues you describe. I wish you well with every success

Best wishes,
Tux

Edited to remove HCP name

 

[HSSS]

Thanks all. Just not sure I’m up to the battle right now, especially if all that happens is I get a new label and no treatments other than painkillers that I already have. As I say it’s been worse (though I do have mini flare ups occasionally). I guess all I can do is hope it’s either not this or it settles down eventually.

now I know the name for sure I’ll do some research on the r-ala option.

 

[Indy51]

I've had something similar for years but seems to be a number of tendinopathies rather than neuropathy. All relating to left hip, glute, trochanteric bursitis, groin and thigh. Did they ever do ultrasounds of your soft tissue? Mine seem to relate particularly to where tendons/muscles attach to bones. They also settle down for long periods of time, then flare up at various points though not really clear to me why. I've definitely got issues with TFL/ITB band going on as well, which Dr Bernstein says is related to glycation of the tissues. I think Jenny Ruhl mentions it as well.

Dr Bernstein - you can download this article from: http://www.diabetes-book.com/long-term-sequelae/

BloodSugar101: https://www.bloodsugar101.com/diabetic-tendon-problems

 

[Indy51]

Just adding after re-reading Jenny Ruhl's article: I had two frozen shoulders a long time before being diagnosed with Type 2, so these things have years to establish themselves unfortunately, as well as being very difficult to overcome.

 

[NicoleC1971]

Something about some supplement is ringing a bell r-ala or something? Anyone ?

Lots of threads on here and some clinical success over in Germany apparently. It s the better form of Lipoeic acid (sorry not sure of the spelling). It can be expensive though and takes time to work so sadly not a miracle cure. But keeping tight bg control is the very best thing you can keep on doing.

 

[DCUKMod]

@HSSS - I tried R-ALA for post surgical neuropathy, to my ribs. In truth, I have no idea if that is what helped, but eventually the neuropathic symptoms subsided a great deal, unless I choose to wear an underwired bra.

Whether or not it helped, it felt better, just knowing I was trying something that didn't involve heavy meds.

Good luck with whatever you choose. Chronic pain is very cruelly debilitating.

 

[Bluetit1802]

Something about some supplement is ringing a bell r-ala or something? Anyone ?

I have mild neuropathy in my feet caused by chemo. It is a common side effect. I must emphasise it is mild, but I keep it under control with R-ALA supplements. In Germany they use R-ALA on severe diabetic neuropathy patients but it is infused in large doses. I don't think this is available in the UK. As for me, I buy mine from here

https://www.healthmonthly.co.uk/swa... Double Strength R-Fraction Alpha Lipoic Acid

If you Google be sure you look at the R-fraction ALA and not the ordinary ALA as that is much less effective.

When I read your initial post my immediate thought was sciatica. Has this been discounted in your case? It is when the long sciatic nerve is trapped somewhere in the back and sends nerve pain in the buttock and down the leg. It doesn't reach the feet and is only one side of the body. Believe me, I know how painful and disabling sciatica is. Mine was caused by a slipped disc and was eventually sorted by surgical removal of the disc. That was back in the 80's and has never returned but the memory of the nerve pain lives on!

 

[HSSS]

I've had something similar for years but seems to be a number of tendinopathies rather than neuropathy. All relating to left hip, glute, trochanteric bursitis, groin and thigh. Did they ever do ultrasounds of your soft tissue? Mine seem to relate particularly to where tendons/muscles attach to bones. They also settle down for long periods of time, then flare up at various points though not really clear to me why. I've definitely got issues with TFL/ITB band going on as well, which Dr Bernstein says is related to glycation of the tissues. I think Jenny Ruhl mentions it as well.

Dr Bernstein - you can download this article from: http://www.diabetes-book.com/long-term-sequelae/

BloodSugar101: https://www.bloodsugar101.com/diabetic-tendon-problems

Thank you. It does seem hard to pin down exact causes. No ultrasounds done. I’ll take a read of the links.

 

[HSSS]

Just adding after re-reading Jenny Ruhl's article: I had two frozen shoulders a long time before being diagnosed with Type 2, so these things have years to establish themselves unfortunately, as well as being very difficult to overcome.

I had a really bad frozen should a year or so before diagnosis which ended up in surgery. Still not right nearly 3 yrs later but functional and minimal pain Also had a nerve issue in an elbow resulting in more surgery a few years back, also not resolved but not deteriorating either.

 

[HSSS]

I have mild neuropathy in my feet caused by chemo. It is a common side effect. I must emphasise it is mild, but I keep it under control with R-ALA supplements. In Germany they use R-ALA on severe diabetic neuropathy patients but it is infused in large doses. I don't think this is available in the UK. As for me, I buy mine from here

https://www.healthmonthly.co.uk/swanson_ultra_double_strength_r-fraction_alpha_lipoic_acid?search_string=Swanson Ultra Double Strength R-Fraction Alpha Lipoic Acid

If you Google be sure you look at the R-fraction ALA and not the ordinary ALA as that is much less effective.

When I read your initial post my immediate thought was sciatica. Has this been discounted in your case? It is when the long sciatic nerve is trapped somewhere in the back and sends nerve pain in the buttock and down the leg. It doesn't reach the feet and is only one side of the body. Believe me, I know how painful and disabling sciatica is. Mine was caused by a slipped disc and was eventually sorted by surgical removal of the disc. That was back in the 80's and has never returned but the memory of the nerve pain lives on!

Thanks for the r-ala details. I’ll investigate.

Sciatica was mentioned by the consultant physio but seemingly ruled out. I think I’ve had a short episode of this in the past and it felt quite different. The pain in only in the buttock/hip. The only sensation that travels south is numbness, lasting a few minutes/hours at most.

 

[HSSS]

I need to stop reading. I’m finding too many things setting off alarm bells. Maybe I’m being paranoid but it seems at least possible I’ve got complications I didn’t even know I had. For once maybe ignorance is bliss so long as I’m also taking the actions I can.

If this hip issue is in fact linked to my diabetes then it seems bgl control and time are the only things that might cure it. Exercise, drugs and physio may give short term relief.

 

[ExChocoholic]

Hip and neuropathy pain. I suffer, as do many, burning feet and legs and a random sore skin feeling. More recently since being very ill in hospital last year - not covid or diabetes related, I've developed sciatica in my right hip, rapidly becoming very debilitating as limits movement and is painful. I've seen mention of this linked to diabetes - I'm T2. Anyone know of this? I'm having x Ray next week.