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

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.

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

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.

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

I would try and find out.

These drugs are known toxins causing PN today.

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 - just getting back to your original post. No, it is not common to have a rapid spread to body-wide symptoms, but based on the posters here it does happen occasionally. However, it seems that in every case I've read about, the rapid onset cases seem to peak out, then it gets somewhat better over time. On the other hand, the cases that come on slowly seem to continue to progress over time.

Of course, I'm just generalizing - this disease is unpredictable and literally anything can happen. The rapid onset cases are brutal and hard to cope with at first, but in some ways they may be better in the long run than the chronic/slowly progressive cases.

All you can do is cope the best you can. I know it's difficult, but try to get some exercise if your body will tolerate it. Look at your diet, and make some improvements if needed (sugar seems to be a big trigger for many - even if they aren't diabetic or even pre-diabetic). Stress reduction is important, although difficult under the circumstances - meditation or something similar might help. And consider a supplement regime - there's tons of information on this site about all the different supplements; start with the basic vitamins and move out from there. And of course, work with your doctor on finding pain medication(s) that work for you.

(I know you've probably read all these things before - I just wanted to re-state them. Although my case is a bit different than yours, I too was in a state of total panic/confusion when my symptoms took off. You can do hours of research and come up with a ton of information - but I think the things I stated above are basics of dealing with PN of unknown cause. (Ideopathic PN 101 if you will)