[Cliffman]

I have only had this hideous disease 4 months and it keeps spreading. Is this common? it's now in my shoulders, upper & lower back and today feels like it's going into my triceps. I thought in most cases it stops at hands, feet, legs. I guess unless a cause is found there's no stopping it. I suppose even the doctors can't answer that question. Frustrated beyond belief! Preforming the smallest chore is huge now.

Cliffman

[Littlepaw]

Hi Cliffman,

I am sorry to hear your symptoms are spreading. It seems odd to me too that SFN would be acting this way so quickly.

I had mentioned CRPS when you came on board and I saw that Jo*Mar did as well. Since CRPS does sometimes arise after heart attack it makes me wonder about this possibility.

I am attaching an interpretive article from RSD Hope's site about Dr. Louise Oaklander's findings on small fiber damage in CRPS 1. I had found the actual research article some time ago but can't locate it right now.
http://www.rsdhope.org/study-confirm...ps-type-i.html

This might be something to consider with your doctors.

[tinaanne]

So sorry for your suffering. I have had this over 15 years now and I remember from the beginning my neurologist at the Mayo Clinic telling me two things. It is still in my hands and feet - BUT, it is like if you stubbed your toe - pretty soon your foot hurts and then your leg. Nerves talk to each other. The other thing he said was there will be a time that your brain will adjust and things that are so hard for you right now will become the norm and there will be an adjustment to living in pain. I remember clearly thinking he was crazy - but truly that was my story. I do live in chronic pain and I do feel it everywhere. (getting my hair done is the worse) HOWEVER you need to find a good neurologist that will help you keep a quality of life - there are good meds that help. Lyrica changed my life and even allowed me to work part time again --- joined with a strong pain killer -- I have continued on with my life. I truly feel for you, but find yourself a doctor that can help. Good luck and keep coming back these people are the best in helping even if you just need to vent! HUGS

[Patrick Winter]

Originally Posted by Cliffman

I have only had this hideous disease 4 months and it keeps spreading. Is this common? it's now in my shoulders, upper & lower back and today feels like it's going into my triceps. I thought in most cases it stops at hands, feet, legs. I guess unless a cause is found there's no stopping it. I suppose even the doctors can't answer that question. Frustrated beyond belief! Preforming the smallest chore is huge now.

Cliffman

Judging by how you mentioned receiving no relief at all from Gabapentin you may wanna ask about what was stated above. I have had issues were SFN seemed to spread but the heart of the pain is feet, hands, shins, wrists and sometimes mildly in my ears in my case.

[mrsD]

I have to wonder if you were given antibiotics when the stents were placed? Fluoroquinolones, cause PN in some people.
(Cipro, Levaquin, Avelox, Flagyl, Tindamax)

[Cliffman]

Originally Posted by mrsD

I have to wonder if you were given antibiotics when the stents were placed? Fluoroquinolones, cause PN in some people.
(Cipro, Levaquin, Avelox, Flagyl, Tindamax)

I didn't receive any of the above in pill form however it may have been given Intravenously. I wonder if I can find out via the operative reports.

Thanks,
Cliffman

[mrsD]

I would try and find out.

These drugs are known toxins causing PN today.

[DejaVu]

Hi Cliffman,

I am sorry you are going through this experience.
Some important insights have been offered. Both are worth looking into, for sure. Many doctors still do not admit to the potential damage of use of the antibiotics mentioned by mrsD.

I hope you are being followed closely. Is your neurologist aware of the rapid spreading? If not, please let your neurologist know. It's important to get neurology working at finding the cause especially when spreading so quickly.
I know from experience, not all neurology departments act quickly; however, please at least be sure your doctors know what's happening, especially if you are in between appointments.

Keep reaching out about this. It must be very frightening, frustrating and more.


DejaVu

[Cliffman]

Originally Posted by DejaVu

Hi Cliffman,

I am sorry you are going through this experience.
Some important insights have been offered. Both are worth looking into, for sure. Many doctors still do not admit to the potential damage of use of the antibiotics mentioned by mrsD.

I hope you are being followed closely. Is your neurologist aware of the rapid spreading? If not, please let your neurologist know. It's important to get neurology working at finding the cause especially when spreading so quickly.
I know from experience, not all neurology departments act quickly; however, please at least be sure your doctors know what's happening, especially if you are in between appointments.

Keep reaching out about this. It must be very frightening, frustrating and more.


DejaVu

The Neurologist is aware of the spreading but does not offer anything. That said, I have an appointment with her on Wednesday. So even if the biopsy says SFN they should still search for a cause?

Love the video link you included..very uplifting song. Thank you!!

Cliffman

[bluesfan]

Hi Cliffman
Just to add another antibiotic to the list to ask about. I was given IV Metrodiazanole during appendectomy a year ago and my PN flared up very badly soon after - still not certain if this was the cause as there were other issues going on but the timing seemed more than coincidental.

Good luck with your appt. tomorrow. Hope you get some answers. Let us know how you get on.