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"NEUROFIBROMATOSIS " (diamondwray)

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saralaurie"In the 3 months I have been with MDJunction I have developed a sense of calmness. I now friends who do not judge me because I have been a mental mess at times. It is such a good feeling to have friends I can tell my deepest thoughts and always get back to me with their support. I have never seen a therapist for long periods of time. Right or wrong, this is the best therapy possible for me. Thanks Roy for getting this up and running and making such a difference in my life. Sara" (saralaurie)

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09/13/2010 09:06 PM
heelsdown
heelsdownPosts: 3
New Member

Hi.

I am a 25 year old female and I have been active all my life. I love being outdoors and walking, hiking, etc. I train horses for a living. My life has kind of been put on hold for 2 years because of foot pain.

First I was diagnosed as having plantar fasciitis and posterior tibial tendonitis due to flat feet. Orthotics helped a bit, but didn't clear things up. In Feb 2010 and June 2010 I had surgery to fix my flat feet (sinus tarsi implant). First sugery on left foot in Feb had complications with a hematoma and took a really long time to heal. My right foot in june did much better, but is stil recovering.

My problem now is that I seem to have developed tarsal tunnel in my left foot, and possibly mildly in my right as well, but my left foot is the problem child. Now, I may have had this condition all along and it just wasn't diagnosed before. But it seems weird that it would pop up more severely after surgery when my flat feet were less severe than before. My main symptom right now is arch pain and tingling. Made worse by walking and standing (standing is the worst!) and relieved by rest and elevation.

I'm really not sure if it is getting better or worse. It seems to have good days and bad days. I have had one cortisone injection so far that seemed to help for a day or two!

I have not had a nerve conduction study. And I can sometimes get a tinel's sign, if I tap really really hard in the right place. But often I cannot get one. But this has been diagnosed as tarsal tunnel based on symptoms.

This is just so hard for me since I am 25, out of college, and haven't really been able to "start" my life. I work with horses for a living, and that is a very physical, on your feet job. So I have only been able to do some part time work that doesn't cause me too much pain. It is also hard because I don't think peolpe understand that someone my age can have this much pain. And I don't want people to think I am lazy. I thrive on hard work, and it makes me so sad that I can't work hard right now. People my age that I meet can't seem to understand what I'm going through, and often I just try to hide it, but it's hard if I have to decline an activity because I just can't do it.

I go between trying to be thankful for all that I CAN do, and being mad about all that I can't. I am scared this will get worse. I am hoping it will get better because I do NOT want surgery. I just had two and don't want more!

Anyway, I just want people to talk to who understand. If anyone in this group would like to be email buddies I think that would help me a lot. Just to vent and exchange ideas, etc.

Anyway, that is my "hi." Thanks for reading, if you read all that! And I hope I can make some friends here.

.

Reply

09/19/2010 03:59 PM  Top
abetterday
abetterday
 
Posts: 230
Member

Hi Heelsdown, welcome to MDJ and the TT forum. I'm sorry to hear of your pain issues. I'm sure it is made worse by the fact that you are so young. I'm older than you, but people probably say the same things to me. "you're too young to be in so much pain", etc. I can sympathize. Is the pain you're having nerve type pain? Have you tried any medications?
Opinions given are based on personal experience. I am not a medical professional of any kind.
--------------------------------------------------------------------------------------------------------------
My medical issues include:RSD/CRPS, Tarsal Tunnel, Carpal Tunnel, Costrocondritis, Fibromyalgia, Primary Infertility, Spinal Stenosis, PTSD and Panic/Anxiety Disorder, Drug-Induced Weight Gain, VasoVagal Syncope, Sciatica, Bulged Disk in my Neck, Allergies, Hypoglycemia, Achilles Tendinopathty, Hypermobility. I had mono twice as a teenager.

Treatments I've Used:3 surgeries, boot cast, custom orthotics and braces, epsom salts, lumbar nerve blocks, epidurals, tibial nerve blocks, tens unit, physical therapy for years, trigger point injections, hydrotherapy, lidocaine patches, steroid shots, prescription pain creams, homeopathic remedies.

Medications I've Used:Celebrex, Flexeril, Lyrica, Savella, Ultram, Lortab, Percocet, Paxil, Wellbutrin, Cymbalta, Topamax, Mobic, Prednisone, Naproxin, Demoral.

* I use a cane, walker and wheelchair depending on the situation.

~~~~ The human spirit is stronger than anything that can happen to it. ~~~~ (C.C.Scott)

09/19/2010 09:56 PM  Top
heelsdown
heelsdownPosts: 3
New Member

Hi,

Thanks for your response! I am having nerve pain. It is mostly tingling, and also just vague aching. But the tingling is what is driving me nutso. I haven't really tried any meds. I'm the type of person who hates taking meds, especially ones that "cover things up." But it got to the point this week where I was going crazy and had to be on my feet a lot, so I experimented on my own. I have a few klonopin left over that had been prescribed for situational anxiety. I do not take them regularly. But I noticed that when I take them, the tingling is way less. Also, I tried a friend's lyrica. It actually helped with the tingling too, but made me dizzy and drunk feeling. And that was on the lowest dose.

I don't want to take pain meds, but I am maybe rethinking that now. I am so much happier without the pain and worry so much less that maybe it is worth it. I just worry about doing more damage while I am on them. And needing to increase doses, etc. I'm the type of person who just wants the root of the problem fixed!!!! AH.

What is your take on pain meds? I think maybe someone needs to convince me that they are not a bad thing!


09/19/2010 11:46 PM  Top
abetterday
abetterday
 
Posts: 230
Member

Well, I do take pain meds. I don't want to of course, but I also do not want to experience incredible pain 24/7. I can tell you that Lyrica has been GREAT for me. I would not be able to walk at all without it. I hope they never take it off the market. I also use anti-depressants for anxiety and pain relief. I use percocet as well everyday. So, I don't know if I'm such a good person to give you an opinion on taking meds. I find I'd rather take my changes on them then put up with the pain. The side effects can be brutal too - like you said with the Lyrica. It does make me sick and dizzy as well. I take it in the morning and then sleep off the side effects. By the time I'm up, I'm ok.

Another reason I take them is because there is no way to fix me. My conditions are chronic with no cures in site. At this point I am at pain management. The attempts to try to fix me didn't work. So I can either try to get some relief with meds or try to tough it out and I'm not brave enough for that yet.

Opinions given are based on personal experience. I am not a medical professional of any kind.
--------------------------------------------------------------------------------------------------------------
My medical issues include:RSD/CRPS, Tarsal Tunnel, Carpal Tunnel, Costrocondritis, Fibromyalgia, Primary Infertility, Spinal Stenosis, PTSD and Panic/Anxiety Disorder, Drug-Induced Weight Gain, VasoVagal Syncope, Sciatica, Bulged Disk in my Neck, Allergies, Hypoglycemia, Achilles Tendinopathty, Hypermobility. I had mono twice as a teenager.

Treatments I've Used:3 surgeries, boot cast, custom orthotics and braces, epsom salts, lumbar nerve blocks, epidurals, tibial nerve blocks, tens unit, physical therapy for years, trigger point injections, hydrotherapy, lidocaine patches, steroid shots, prescription pain creams, homeopathic remedies.

Medications I've Used:Celebrex, Flexeril, Lyrica, Savella, Ultram, Lortab, Percocet, Paxil, Wellbutrin, Cymbalta, Topamax, Mobic, Prednisone, Naproxin, Demoral.

* I use a cane, walker and wheelchair depending on the situation.

~~~~ The human spirit is stronger than anything that can happen to it. ~~~~ (C.C.Scott)

09/20/2010 06:01 AM  Top
RNAlli09
Posts: 12
New Member

Hey there.. taking pain meds sucks, but having pain is WAY worse for me. I am young too.. I am 33 and have been dealing with this for 13 years! So I was 20 when I started to have foot issues! So I understand how it is when you're young and in pain. I think mine all started when I became a nuse and was walking the floors all day long. Killed my feet. Ugh.So if you want someone to email about all this crap... email me! RNAlli09 @ aol. com

Alli from New Mexico


09/20/2010 11:03 PM  Top
heelsdown
heelsdownPosts: 3
New Member

Hi Alli,

I'm sorry that you have had so much pain for so long. I'm only 25 and can't comprehend how the rest of my life might be filled with this.

I am really having a ton of pain today, more than normal, and have to go work tomorrow morning at 6 (and be on my feet) and feel sick thinking about it. I don't know what to do anymore.


10/05/2010 12:59 PM  Top
abetterday
abetterday
 
Posts: 230
Member

Hi Alli, that's nice that you offered your email. Do you have tarsal tunnel?

Heelsdown, I hope you are having a low pain day. I'm sorry you have to work on your feet. Sounds awful.

Opinions given are based on personal experience. I am not a medical professional of any kind.
--------------------------------------------------------------------------------------------------------------
My medical issues include:RSD/CRPS, Tarsal Tunnel, Carpal Tunnel, Costrocondritis, Fibromyalgia, Primary Infertility, Spinal Stenosis, PTSD and Panic/Anxiety Disorder, Drug-Induced Weight Gain, VasoVagal Syncope, Sciatica, Bulged Disk in my Neck, Allergies, Hypoglycemia, Achilles Tendinopathty, Hypermobility. I had mono twice as a teenager.

Treatments I've Used:3 surgeries, boot cast, custom orthotics and braces, epsom salts, lumbar nerve blocks, epidurals, tibial nerve blocks, tens unit, physical therapy for years, trigger point injections, hydrotherapy, lidocaine patches, steroid shots, prescription pain creams, homeopathic remedies.

Medications I've Used:Celebrex, Flexeril, Lyrica, Savella, Ultram, Lortab, Percocet, Paxil, Wellbutrin, Cymbalta, Topamax, Mobic, Prednisone, Naproxin, Demoral.

* I use a cane, walker and wheelchair depending on the situation.

~~~~ The human spirit is stronger than anything that can happen to it. ~~~~ (C.C.Scott)

10/07/2010 04:24 PM  Top
RNAlli09
Posts: 12
New Member

Hi abetterday, Yes, I do have TTS. It sucks. I am trying to take it day by day, but somedays it's really hard! yuck!

12/31/2010 02:48 PM  Top
darrencameron
Posts: 1
New Member

Wow we are not alone Had tt surgery dec 9 and plantar release was diagnosed with pf over two years ago and have tried all remedies to rectify the problem (lots at my expense ) did 2 years with out any hard meds tylenol ,advil etc finally got in to see a prolific foot surgeon who said first off baxters nerve (TT) after surgery perks get me through the days just got cast off 20 days later and trying to heal but there is lots of pain and numbness time will tell glad to have a place to vent and get support as we all need it

12/28/2011 09:57 PM  Top
feuer
Posts: 3
New Member

HD, I realize this post is old, but I am new to the sight. I absolutely understand how frustrating this can be. I have suffered with this ever since I was about 24. I have been in fitness for most of my life and believe mine is do to strenuous weight training and possibly running. No doctor has confirmed this, but it is pretty evident to me. Been to many different doctors and no one seems to be able to give a definitive answer as to what the cause is. I certainly don't want any frivolous surgery. I have all kinds of dettails about symptoms, what triggers it, and so forth. Good luck and let me know if I can help (or if you've had any luck).
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