Let Me Start Over
 

I never oringally posted with all my info, and since i have not had much feedback, i am going to post the long story. i know that no one is a doc, but docs have not helped me so far, and i do not seem to fit the "normal" PN pic.
Background:
20 years ago, I had multiple neruoma sugeries in my feet which gave minor relief, but caused fibromyalgia and pain. dx, pain syndrome or fibro, take your pick. i was told they were the same. I also have disc disease, overuse in my arms and hands and carpal tunnel. In spite of this, I lived in some pain for 20 years, raising a family and working, doing the best I could and being a member of life. I was not a person to give up. I traveled and enjoyed people.
16 months ago, I decided to try prolotherapy shots in my feet to see if I could reduce the pain. The injections caused great swelling and pain, and when the swelling went down, the pain stayed in my feet and move up my legs to my spine in such debilitating degree that I cannot stand for more than five minutes. It felt like the pain was moving up my nerves, not my muscles. I have a burning, stabbing, knifing pain that gets to level 8 or 9 pain if I try to walk. I feel as if someone is cutting the nerves in my legs and feet, pouring acid on the skin, and electrocuting me at the same time. I am no longer part of life and in a wheelchair most of the time. I can walk in and out of a place like an office, but by the time I get in I must sit down.
Doctors have prescribed everything from a spinal stim put in my back, or go a Fentanyl patch. I am pretty sure it is neuropathic pain with a central pain part to it. All from these prolotherapy shots! Now I need heavy meds to function, but I cannot tolerate them.
Yes, my feet were hurting before I had the shots, but I could walk from one end of the mall to the other and be in some pain, but not need a wheelchair! And now I have tortuous pain that often is unbearable.

in addition to the neuro who has not helped me yet (sheduled for EMG the 24th) and two pain docs in the next two weeks, i am being treated by a doc for neurovascular tone for the fibro. he thinks he can help my burning pain too, but he is very much into his program and i do not think he understand the severity of my nerve pain coming on after the prolotherapy shots.

so is my situation something that belongs here? i am not getting much response, i have read most all the sites suggested, but it is not the same as talking to people to have similiar symtoms. nothing quite fits, but maybe that is the way with PN.
Steph

Steff,
Sorry that I have nothing to offer except a big thanks for your neuroma information, I can still get around with mine and will not proceed with any treatments since reading about your experiences. When I overdo it I get a lot of pain that most people refer to as flair ups. So like most cats I just do some stretching and take things very easy. Thanks again for your very informative post and hope some one can offer you the solution you seek.

Stef
 

Summers are slow on the forum. School just started, people are relocating to new homes, lots of our regulars are now out for vacation or sabatical. And this week-end is a long holiday week-end. So you will not get lots and lots of responses at this time.

I think you pretty well summed it up when you said "nothing quite fits, but maybe that's the way it is with pn". None of us have exactly the same pain and few of us have exactly the same story. I've been a part of this forum for almost 4 years and I've only experienced one other person who had similar circumstances and pain description. Lots of us have some symptoms that match others, but none of us are exactly alike in our suffering or the reasons that cause it. The human body is too complex for it to all just fit a cookie cutter match.

I've followed the story of all of your posts and there is just no way that any of us can say you do or do not belong here. We don't know what caused your foot pain before the surgery. What you have now does indeed seem to be of a nature that I suspect it was caused by the prolotherapy. I am not a doctor tho or even a nurse. There are just no exact answers to your complex problem. Nor to mine or many of the rest of us.

Whether you decide to stay here and learn what you can from us..has to be your decision. We will help with what we can.

Billye

Steff:

Hi, I have read your postings. I can only tell you what helped my husband who has had (initially diagnosed idiopathic), but later on after a spinal tap, he was diagnosed CIDP.

He was on all pain meds, he looked into spinal stimulators, epidurals (he did this , it did nothing).

What I can tell you that definitely improved his quality of life and took away a great deal of his pain and got him weaned off the fentanyl patch (and when you find something that takes away neuropathic pain), well you share it with others. So here's what helped my husband (and if I mentioned this in any previous post, please excuse me but you really should look into this).

We found a chiropractic/neurologist. It's a special chiropractor who takes 3 years of neurology. There aren't a great many out there but more and more are cropping up. This was Dr. Theirl in New York City.

All I can tell you is my husband walked in weighing 267, stiff as a board, very very bad PN and on the fentanyl patch. He had tried everything including acupuncture which did work for a few weeks but then stopped.

This guy gave him a 3 hour examination. Tested this part of his body, that part, (really looked him over good).

Alan went to him 3 times a week initially, then two times, then one time and now it's every few months. It is an expensive undertaking but if your insurance company covers it, I would go for it in a heartbeat.

They treat the whole body, they don't give you drugs. They do certain adjustments and they use a G5 machine. Alan says when this guy does the G5 machine on him, Alan doesn't want to go home. That's how good it feels.

You have a lot of stuff going on in your body. You are not a diabetic right?? So it's not nerve damage from Diabetes (that's why the methyl b-12 worked on me)

If you can look into going to see a chiropractic/neurologist in your area (if you'd like me to find one for you, just private message me your city and zip code). These guys do work miracles. My husband is living proof.

Did it completely take away his neuropathic pain. No, because we later found out that his toes are compressed and we do the toe flexor thingee between his toes and that is working out beautifully and Alan has other stuff going on, like foot ulcers, etc.

But Alan was a completely different human being 3 months after going to the chiro/neurologist.

So think about this, okay?

Melody

thanks
 

sue and mel-thanks
about neuromas-
if you can mangae with shoe change and alcohol injections-dont do surgery until you are in a wheelchair with pain-then get the best doc you can find nad research reaseach
steff

Steff?
 

You ARE learning? That nothing 'quite' fits? Yep.
Welcome to FRUSTRATION CITY! Do NOT obsess about causes at this point in your life....WORK on finding ways to treat your pain effectively.
The 'why's' of it all can be determined later -if at all, once you can abate some of the PAIN? Sometimes, the 'why's of it all' are never determined.
Get tested, go from there? Keep pushing in this quarter you mite just get super lucky? I know I did, I was NOT internet-wise at the time but KNEW something was plain old WRONG with whatever it was going on in ME. So I was like a terrier dog digging, asking and asking more questions....Follow your instincts, THEY are your 'self' indicators as to what mite be the right route to follow. I truly wish at this point that you CAN find the super-perfect help you need.

Nerve damage of any kind, form shape and the overall pain in it's slew of 'presentations' is so hard to describe. Just keep in mind that docs' tend to 'knock' off a few 'numbers' when we say we've a pain of '7'. It's all in how you present the statement that YOU HAVE A PAIN OF '7'?

I have said to others, and I say again now...be honest, factual, visually and tactilely descriptive and NOT emotional...once a doc beleives you? AFTER the office visit is over...well then you can cry? And probably a whole lot?

As for neuromas, I have not had that particular pleasure, but I am convinced that you HURT. The trauma or insult to your nerves and how it is all affecting you is/has to be up to SUPER good docs to diagnose and treat. I hope and hope some more that you get the D& T? - j

Steff---maybe it's not neuropathic; maybe you have a fasciitis going up the leg. Would kinda fit with the old fibro type thing. Have you considered giving up on doctors for a while and using bodyworkers? I've gotten amazing pain relief from a Feldenkrais practitioner and acupuncturist. really amazing.

I think doctors are very good with problems of the organs, but not great with problems of the matrix our organs sit in. I had a plantar fasciitis many many years ago, and it sounds like what you have been experiencing. It was imossibl to put my foot on the ground. I had injections of steroids right into my feet, along with high dose antiinflammatories, like prednisone, to stop it.

But my feldenkrais practitioner gets good results with her gentle movements.

Are you in a City? Are you open to non-allopathic interventions?

Yeah, nothing fits together, but maybe it's not about an organ, per se.

Prolotherapy, which I almost had, is about getting tendons and fascia inflamed enough to scar down and tighten up loose joints. Maybe you had a stronger than expectable inflammation, which is ongoing.

Anybody put you on a 5 day Medrol pack to see if this worked? It's a good test. It's 5 days of prednisone, starting with a high dose and getting off over the 5 days. I've been on it many times, and it's been used to figure out if my pain was inflammatory and to help my sinuses.

Just some labor day weekend loose end thoughts.

hey thanks for the support
 

tried predisone pack-nada/good idea though
tried celebrex-nada and accupunture too.liked the accupunture-didnt last more than on the table-and then it made it worse-wish that would work or didint cost-
am going to a cardiologist who treats fibro with blood volume increase heart drug and pamelor
hoping pamelor will help
did the feldan--whatever long time ago and had massage -same as accupunture
would be great if all these could be in one place and used everyday and worked on etc to see which if any would have an effect-the way health care should be wouldnt it?
looking into the anadyone therapy--taking the vits
trying not to give up this minute who knows the next-
been dealing with pain for a long time, but not this intense or debilitating
part of the problem is that your world get so small.
thanks
steff

It does
 

doesn't it,even to the point of losing the one's we love the most. We just
have had some folks we have and are and will ailways be worried about.
And Billye's right slow time right now,but look out,it will be perk up
time soon. So don't give up on us,please keep posting,after all we
need your advice as well. Steph if we sounded rude,i'm sorry,as for
me i've had a very painfull leg,in and out of the hospital.teeth,problems
and falling lately getting up from wheelchair,and down i go again..And the
pt lady is trying to kill me,but it might be she's helping. Honest we have had
a long list latlely of oh no's. After nest weekend the 7th and 8th feel free
to e-mail me,but your longer letter has helped,thanks for not giving up.
I had a bad thing i did with my feet and a well he was a podiatrist,really
messed me up and others. When we are in pain and believe me i have PN
and new it i decided i can't stand this pain and agreed to something stupid,
can i undo it no,but i am now doing the best i can,and yes i was a nurse.
I reread you posts and i will say again it's a slow time and when you don't
feel good you answers are slow,and this has been a rough time for not
only us our childen,our buddies,hubands.....Keep posting and giving advice
and hopfully we can help you. ya here... Take care and i would suspect
PN is a possiblilty...But couldn't give you a dwfintly yes.. Get those tests
but trust you Dr. I'm sorry do you have limited insurance,alot of use do.
:) Take care if we look like we are over looking you fuss at Mel she looks
beautifull but can take your head off....Sue

Hi Steff, have you tried a T.E.N.S machine on your feet ?
http://www.mydr.com.au/default.asp?article=4198