PT for PN starts next week (Physical Therapy for Peripheral Neuropathy)

[Carolina]

Dearest Angels,

The orders for physical therapy related to my peripheral neuropathy came through to the PT clinic today. I must say it is gratifying to see the look on the professionals' faces when they read the degree of nerve damage I deal with. 

Even tho' they have been treating me twice a week, and know there is something wrong, to READ the extent and degree of the damage is shocking.  That, and of course, I 'don't look sick' and I'll be d....d if I 'walk that weird'....well I do walk slowly, but I work very hard to walk reasonably smoothly. 

So few people 'get it' about what I deal with.  And seeing two guys who have worked with me for 6 weeks really understand what I have to deal with was 'interesting' and I must admit a bit gratifying.

And of course, it's all gonna get better from here, right?   
Hugs,  Elaine.     Getting stuff ready to take to Paris.  Even our luggage is special order for the French family.  We''ll bring back their old stuff.  It's fun being 'Santa on the Seine  in May'.

[jazzlover]

So what kind of exercises will they have you do??

Good luck with it! Hope it helps.

[anita]

How do they plan to approach this, like Jazzlover said?  Nerve damage cannot be reversed, so what's the goal?  How are they going to help?

[Carolina]

Hi jazz,

Well, we've sort of been working on it since I had rapid remission of the Plantar's Fascitis which is why I started.  I had an order which lasted six week, so we moved on from the strictly PF condition.

My legs and feet are very atrophied and stiff (not flexible) from the PN.  So I have to do exercise to increase the range of motion of my feet, up and down and side to side and strengthen the muscles using the nerves I do have.  It's very hard work, in the weirdest way.

To pull each foot up towards my knee and lower it slowly.  Usually the therapist pushes it higher than I can actually force it to raise.

And I press against the tension of bands.  I also rock on a platform back and forth and side to side.  It's all very specialized.

And then I have heat and electrical stimulation to my calves...that's easy cause it's at the end and I just iie there meditating.

I have to balance on the rocking platform with my eyes closed, which is really hard and makes me seasick.

First I warm up on the exercise bike.

We have to be careful because my left knee is 'bone on bone', as well.    Also since I have profound nerve damage I don't feel pain, so I have to be careful I don't over do.

What the therapist is trying to do is help me avoid so much 'foot drop'...when I walk my foot drags down and my toe catches on the floor, or rug, or whatever.  I haven't fallen for a long time, because I'm very careful.  But the idea is to strengthen me so I don't drop my toe so badly.   

Also when I walk my feet 'flap down' so I'm concentrating on rolling on my feet, instead of flapping.  For that I need more flexibility.  Everything was getting rigid, tight and atrophied in the four years I've have profound PN.

I can't 'get well' or even 'get much better'.  But I can feel some accomplishment with what I have, and undo some of the damage to what is there, the ligaments and muscles.

Remember, I also have very bad Raynaud's in my feet, and a condition where the skin of my feet gets very thick and then cracks and bleeds and peels.  So we're dealing with a perfect storm of things: Raynaud's, arthritis in my feet, cracking and bleeding, Plantar's Fascitis, AND Peripheral Neuropathy.  AND my left knee is going, and the meniscus is torn in my right knee.

I do lots of exercises at home, with the elastic bands.

Anyway, ask any questions that you have.  I wish I could say that my PN was going to be cured or significantly ameliorated, but I know that's not going to happen.

Hugs,  Elaine

[jazzlover]

OH.. thanks... yes, I've had PT on my feet for PF. I know of what you speak. I also have Raynaud's and some amount of PN .. including the foot drop. I walk VERY carefully.

You've reminded me to keep up with my own exercises!! I tried to go back to regular exercise about 2 wks ago and now my feet are flared up again. But I need to do what I can to strengthen my feet.

Hope you make some progress!

[anita]

Thanks for the details.  Sounds as though this is a wide range strengthening program.  PN can keep you from using legs and such, so then they atrophy.  This will certainly help you.

As you said, PN will not improve, but your strength will and this will be good for you overall.

[Ripvanann]

Elaine,

Bless your heart. You're really working so hard at this. Sounds grueling actually. It's so scary to NOT be able to trust your own legs and feet underneath you!  It's amazing to me that you've kept going without assisted walking. Shows who you are!

Have they given you anything for the Raynaud's?


I am praying that this will bring you some confidence in your walking and that you will see results quickly... even though it will obviously take time, even a little progress goes a long way to give us hope!

Grace, peace and blessings to you.

~Andrea

[machenza]

Bless you Dear,

I love your courage, and enthusiasm, and the mental strength you have. I am sure in only few therapies you will be much better; because you know how to get there. You have it in you,

Thank you for sharing your experience. You give us hope

Nellie

[1722Mich]

I read your post & am wondering if your leg difficulties began with sensorial issues such as numbness, tingling or burning or did you have stiffness & weakness first. I have been having difficulties with my muscles for over a year. I walk very slowly, fatigue quickly & at times have balance issues because of this. I also get very stiff if I sit for a while.  The cold or damp exacerbates this. Have had a lot of testing & the docs say it is peripheral neuropathy. Unlike most of the folks who post here I don't really have the sensory disturbances. I wouldn't say I have normal sensation though. I have hypersensitivity to pain at times & patchy numbness.  Always wondering what is going to come next. One of my biggest fears is that the muscles will get worse. I too have plantar fasciitis & had the same type of PT you are getting. They noted my other issues during those sessions & prompted me to get further testing that led to my peripheral neuropathy diagnosis. I've wondered if I should ask for more PT but what they did before never really helped with my strength or balance.  Would like to hear more about how your difficulties began & progressed. Also interested in how PT goes for you.  Thank you do much for sharing!!

[Carolina]

Hi 1722Mich,

Honestly, I had so much going on in the four years during which my PN developed that I can't say that i realized what was happening.

I was having anemia and chronic UTI's, (which I had never had, and which started at age 66, and then I had hearing loss, and was diagnosed with Interstitial Cystitis.  For the UTI's I was taking extensive doses of one of the antibiotics for urinary tract infections.

During that time I found it harder and harder to walk any distance.  I kept tripping and falling.  I couldn't ride a new bicycle that we'd bought for me (I thought there was something wrong with the bike).  I would be showering at the health club, and get dizzy and fell backwards out of the shower TWICE!  I was so lucky that with all the falls I wasn't hurt badly.

We went on a hike that involved climbing up a cliff face, and I simply couldn't make the hard part of the climb without horrific effort, and then had terrible trouble balancing on the narrow rock ledges.

I thought it was just that I was getting 'out of shape' even tho' I was exercising and everything.

Then I was having a chronic headache, so finally I saw a neurologist.  As soon as he saw me walk he announced that I had ataxia (trouble walking) and foot drop (which is why I fell so often, tripping).

He did gazillion tests (3 MRI's and 2 CT in one morning) Nerve conduction studies, EEGs, Spinal Tap, everything to look for the cause of both of the  headache and walking problems.

My big fear was a brain tumor.  Not that, and in fact no real cause of my profound PN was found.

There are three major nerves in our legs, and two of mine are completely unresponsive and the third is severely damaged.

The best guess is that it is from the antibiotic I took for the UTIs.  All urinary tract infection antibiotics are known to have a remote but clear possibility of causing nerve damage, specifically PN.

The diagnoses was made in early 2010.  The same results were founds by my current neurologist on Nerve conduction studies done last Fall.  The PN isn't worse, but it can  hardly get worse.  It just hasn't spread.

There is still no cause discernible.  Some people have diabetic neuropathy  or alcoholic neuropathy or autoimmune neuropathy, or neuropathy caused by damage from spinal pressure.  None of those apply to me.

I do have complete copper deficiency and am now supplementing at the highest safe dosage (10 mg of copper a day) to see if any copper shows up in my system.  But the neuropathy from copper deficiency usually continues throughout the entire body if not addressed.  And mine stopped with my legs.

Also if the copper deficiency has caused the neuropathy, correcting the deficiency doesn't cure the neuropathy.

In most cases, whatever has caused neuropathy, once it is found, the neuropathy still cannot be fixed.

Because I had so much going on before it was diagnosed, while it was developing, and afterwards (I tore the meniscus in my left knee, with a piece jammed in the joint) and was in severe pain and disabled for almost four months during the diagnosis and then surgery and recovery.  And we moved three times, and generally I was having so many problems, I rather just ignored the neuropathy side of things.

Since then I have been diagnosed with Immune Deficiency and started monthly IVIG treatment for that.

Finally I developed Plantar's Fascitis in my feet, due to the stiffening and atrophy of my legs and feet.

And so at last, four years after diagnosis, and probably 6-8 years after the PN begin developing, I am addressing it with PT.

The PT is just to make me stronger and more flexible and to stop the atrophy and tightening of the ligaments in my feet and legs.

Today my husband and I went to the local mall and we walked around the mall.  It took almost an hour and I stopped once for 10 minutes to rest.  I also rely on his arm to help me.

But that's the most I've walked in years.  And I intend to keep it up.

It's good to be finally addressing this issue.

Hugs,  Elaine

[aussie mum]

Elaine,

I am constantly inspired by your perseverance and determination to improve your health and wellbeing. You have had many battles to face over the past years.
Thank you for sharing your journey with us as it will help many others understand their own health issues.

I always have a strong sense of relief and vindication when the medical tests FINALLY prove that I have been dealing with something that others have doubted.
It is obvious you have had a very difficult time with your PN, made all the more tragic that it looks to have been medically induced.

Wishing you all the best for your PT.  I hope all the hard work will make your day to day life a lot easier.

Take Care
Aussie Mum

[jazzlover]

I was having anemia and chronic UTI's, (which I had never had, and which started at age 66, and then I had hearing loss, and was diagnosed with Interstitial Cystitis.  For the UTI's I was taking extensive doses of one of the antibiotics for urinary tract infections.

During that time I found it harder and harder to walk any distance.
......................

The best guess is that it is from the antibiotic I took for the UTIs.  All urinary tract infection antibiotics are known to have a remote but clear possibility of causing nerve damage, specifically PN.

-
That's exactly what I was thinking as I read the first part of your message. You were "floxed"...I think I was too, but perhaps to a lesser extent.

I took lots of fluoroquinolones back in the 90's for IC-related infections and then again in the 00's for Lyme-related infections...

I'll try to bring info later on copper toxicity. I think if you have copper toxicity, it makes you have LESS copper available and that causes many problems.

[Carolina]

Hi Jazzlover,

I don't have copper toxicity.  The test for copper is the 24-hour urine test, which I've had twice.  Toxicity: Too much copper in my system would show up with lots of copper in my urine.  Deficiency: Too little copper in my system would show up with  too little copper in my urine. 

I have NO copper in my urine.  This is beyond strange.

However, I am used to strange.  And right now, I'm feeling pretty good, over all.

Yes, probably I was 'floxed'.  That's the best guess anyone has made.  And even knowing all that, I have a resistant form of e-coli when I do have UTIs (which I haven't had for two years!) and MUST take Macrobid (nitrofurantoin) because my e-coli are resistant to everything else.  THEREFORE, I have taken Macrobid once even after I knew it had probably caused the PN.

This was the diagnosis from Nerve Conduction studies in 2010 and again at the end of 2013:

1. PROFOUND AXONAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
2. PERIPHERAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
3. RIGHT AND LEFT SURAL NERVE NEUROPATHY.

On the PT for PN front I've started walking, both in the Mall and on the treadmill now at the health club.  So I'm trying to strengthen my legs and feet and making the effort is half the battle, I think.

This morning I go to my meditation class.  Patience, persistence, acceptance.

Hugs,  Elaine