Here to introduce myself...
 

Hi. Im Andy. Im 35 & have severe chronic pain due to a crushed & trapped nerve in my pelvis from long distance cycling.

My story story started three years ago when my father passed away. Me & my pops were extremely close before a falling out put distance between us. When he passed away, I didn't know how to deal with him never being around again & also never being able to patch things up. This ate away at me & I unfortunately locked myself away in my own head & became a bit of a 'character recluse'. This took a terrible toll on my thirteen year relationship & eighteen months ago, my girlfriend decided enough was enough & walked away. Cant say I entirely blame her, as I can see now that I wasn't the easiest to live with & love anymore. She summed it up by saying that she didn't think I was 'in love' with her anymore & that I wasn't the "happy go lucky cheeky chappy" that she had been in love with for many happy years...

After my relationship ended & I lost my home, I threw myself into a mixture of alcohol, cocaine & my job... Working 15+ hour days for five days per week & then drinking & snorting myself into oblivion for the other two, was how I lived my life for months after the split. I finally decided to sort myself out about July last year. Was going to the gym, running & cycling. I had always been extremely active with football, running, kickboxing, weights, surfing, etc, but I had never cycled. I had friends who cycled a lot, so I figured I would just join them. I picked up a road bike & set about regaining my fitness. Started off with small rides of about 15-20 miles & regained my fitness levels in a few weeks, so as I had a desire to push myself, I started to do 20-30 miles a few times in the week & my last cycle was a 50 mile ride. Unfortunately, as a complete novice, I was totally unaware that a bike needs to be set up for individual body size. My bike was set up completely wrong for my body shape/size & with doing so much, so quickly, I did damage to my pelvis & that crushed & trapped nerves. This has caused excruciating pain which starts from my hips & distributes itself down through my groin, to my knees.

It took a couple of months bad form from the cycling to make the pain become constant. I had ignored it to that point thinking I should just "man up" & it would sort itself out over time. Twelve months on & it has become worse & worse. It cost me my dream job as a graphic designer in the sports industry. In the space of three years, I had lost everything & was in pain I didn't realise existed so I looked for a way out. I was helped by my brother to get through the worst of my slide into my dark place.

As of today, I am in the process of receiving cortisone & anaesthetic injections to try & reduce pain & inflammation on the ligament to try & 'untrap' the nerve & hope it can settle itself over time. They don't really help much. I am told that it is unlikely that my injury will ever fully recover & the most probable scenario is that the pain becomes "manageable. I am practically housebound twelve months after initial injury & have had exactly six blissful days which have been what I would class as manageable.

I find it incredibly frustrating to have gone from being extremely active, to having to ask for help with the simplest of tasks. I also find it very difficult coping with not being able to continue with my career.

But despite all of the above, I am trying to look forward. I have a favourite quote which reads, "credula vitam spes fovet et melius cras fore semper dicit..." The translation for that is "credulous hope supports our life & always says that tomorrow will be better..." Despite the overall definition of credulity being one of gullibility, I choose to interpret it as 'trusting positivity'. I choose to have hope that tomorrow will be better, despite how unlikely it is. I have been at the bottom of a dark hole feeling the floor fall away & its not a fun place to feel like the loneliest person in a room even though you are with people who love & care about you. So I choose to try & see the good in most situations. I choose to believe in hope...


Cripes, that is a long post! Its good to get things off the chest though, so thank you for reading.

Welcome Andy Pablo. :Tip-Hat:

Someone will be along to help.

Hello Andy_Pablo,

Welcome to the NeuroTalk Support Groups.

I'm sorry to read you're in so much pain.

There is a
Chronic Pain Forum
but if you need any help finding your way around the various forums here, please just ask and someone will help you.

take care.

Thank you for the welcome

Nice to meet you!!
 

http://i288.photobucket.com/albums/l.../Welcome/i.gif

Hi there Andy_Pablo, and welcome from me as well.
I'm sorry you have all that to contend with, but I see that you've already been steered in the direction.
I hope you get some help soon.

--------

Hi Andy,

Thanks for sharing your story. There seems to be a common thread for many of us on this site in that we suffered emotional traumas and were often workaholics before our conditions occurred. I think this is not a coincidence.
I am looking into MindBody healing which suggests that repressed rage can cause pain.

I also find it hard to go from being a very active person (physically and mentally) to someone who has to rely on others to get basic things done. Its frustrating and I feel guilty for asking for help so much. I suppose we have to learn to get over that.

I also want to believe in hope. Take care.

Hi Andy
 

Welcome to NT. You are awesome. Even after your painful experiences, you still express hope. Do you know how that effects the rest of us to have hope when none seems to be available?
I hope that your recovery can go further. Have you tried neuro muscular therapy? This is what athletes use when they blow out a body part. I blew out my arm and the ulner nerve from over work. I have been in intensive therapy to get this smashed nerve to calm down. It isn't trapped, it is squashed from the muscles and tendons being inflamed.
This neuro massage is nothing like regular massage. It is special and your pain specialist will know about it. Works in conjunction with shots. I do not take steroids, but lidocane injections into the nerve, to calm it. It breaks the pain cycle. Shots hurt, but they help more than any steroid I ever tried.
Let me know if you decide to look into this kind of therapy. If you do it, be prepared... it hurts, and it hurts a lot. I have had good results with reduction in pain in just 6 sessions. ginnie

Thank you all for the warm welcome. Its nice to find a place to get things off the chest with people who understand. I feel that the empathy of family & friends can sometimes run dry. As you all probably can associate with, sympathy is not what I am after, but friends being able to understand why I cant do the things I used to, despite physically looking the same (albeit without my abs) is all I desire. Well, apart from manageable pain, lol...

I hadn't heard of neuro muscular therapy Ginnie. I will do a little research into that & nod my doctor in that direction to see what their thoughts are.

Hope is all we have. I have been of the negative mindset & it tipped me to breaking point, so a conscious choice of looking for positives, no matter how small, is extremely important & really does help. I am also aware that many many others have things far worse than I do...

Hi Andy
 

My pain specialist is the one who told me about this kind of therapy. The field is called " Certified Neuromuscular therapist" Oh she would give pain meds, that wasn't the issue. I wanted to keep my arm, I am an artist, and I was losing function of the whole arm. After 4 MRI's, EMG's and 6 doctors, Yep I blew my arm out. So this therapy was introduced to me. She got me to this type of therapist, and believe me " IT HURTS" just as bad as the pain you feel now. However..... I am 6 sessions into it, and there is a reduction in the intensity of the pain. So I say, bring on the pain, if that is what it takes to resolve this and get me back to some kind of normal.
I don't know if it can work for you Andy. But there is something to this high teck sports medicine. You did injure being in a sport, so just maybe this is something that would indeed help. Your nerve is injured, and so is mine. Look into it. I didn't really believe it would work, or really what it was all about. I go back Friday with my cry rag, and some kind of really good music,, and welcome the pain. good luck. ginnie

-------

Hi ginnie,

How do the Lidocain injections work? From what I understand Lidocaine is an anaesthetic? Does the effect last short term or is it meant to have a longer term effect over time?

Joanne

Hi JK
 

Yes they work, and there is a trick to getting them so they don't hurt so much. The nerve is were they need to put it, and the nerve hurts. So they mash on the nerve a bit, make it ouch, then give the injections which really at that point don't hurt. Sting a bit. After the first two, nothing. The injections last most of the day and night. It is meant to break the pain cycle. I took meds at home after the shots wore off, and did cold 20 on and 20 off.
These shots were followed the next day with the massage. That night I noticed a small difference in the intensity of the pain in my arm
I am re dong this whole thing over again with shots every other week, and massaged every week. Since medicare will not pay to help me, only for the tests, this is expensive. I guess debt does not matter when your ability to use your arm is at stake. I do not understand our medical system. If they pay to get the arm fixed, no more tests, shots and doctors calls. To me, the therapy is cheaper, and is a way to stop going into the doctor gerbil wheel.
I would try this, if I were a patient not knowing anything about it like I did.
I went in blind on the recommendation of my pain specialist, who by the way said she had my same kind of injury. Doctors usually do not relate personal stuff to their patients. She took this same therapy and can do surgery again.
ginnie.

-----------

Hi again,

So will you need to keep getting the shots long term, or is the expectation that the pain will lessen over time?

Hi JK123
 

Don't know where the post went. PM me and we will e-mail. ginnie

Quote for You
 

Perfer et obdura; dolor hic dibi proderit olim.

(Be patient and tough; someday this pain will be useful to you.)

I like that.

There is always a lesson to be learned from every single experience in life...

Im really pleased that I have found this place. There appears to be a lot of amazing & brave individuals on here. Some people put my situation into a little perspective...

New Here & Want Information About This
 

Hi!
I'm Deb. I'm 62 and live in Pennsylvania, USA.

I've been mis-diagnosed with MS by my old neurologist for 30+ years. In fact, I was on Avonex (a weekly MS injection) since 1998. That's a long time!

This might sound strange but I always knew that my old neuro wasn't right for me. In fact, I said that I wasn't going to see him again 30 years ago after I saw him the first time. Naturally, she said I was. I was in such poor shape at the time, I had no strength to argue with her so off I went. I should say here that I don't drive and Mom did. So, I stuck with him for all those years. I did periodically bring up not going back to see him but was met with the same brick wall.

Now, I'm not putting Mom down. Not at all! She stuck with me through thick & thin. Through all of the changes, hospital stays, PT, my learning to walk again, mood swings, etc. She did the best that she could without the knowledge.

Back in the 70s I was admitted to the hospital in Pittsburgh, PA. They did find the ataxia back then but why the old neuro didn't follow up on it & said that I had MS, I'll never know. He did tell me that Pittsburgh didn't know what they were talking about.

During that time, I've been sent to pain management. They wanted to put me on the newest pain meds since I was in severe pain 24/7. They didn't when I told them that I reacted to meds easily. They asked which ones but I only remembered a few. I guess alot of you guys know that in some reactions you don't know what happened...just that it happened! So, this place called my then neuro asking what all I couldn't take. He couldn't tell them since he didn't write it down. All he could do was confirm what I said.

Of course, he sent me to PT for different things. He told me that I have Fybromyalgia among other things. When I was 8 years old, I was told I have Epilepsy & was put on anti-'convulsive meds right away. I'm told now by my new neuro, who did all kinds of tests, that there isn't any sign of Epilepsy. They haven't said anything about the FM so I'm confused on this. Maybe they're waiting for seizures or the pain to start so they can tell for sure?

Long story short, my mother passed away about 4 years ago & I was able to change neuros. I asked to be taken off those MS injections. That was like coming out of a fog! I also asked if I could cut down the anti-convulsive meds (I was on 3000 mg. a day) & that gave me more energy for a while. The fatigue, pain, dizziness, and just feeling off is back. I recently saw my new neuro last week & he's doing all kinds of tests. I'm glad this guy listens & is keeping an eye on things.

Geez. This is turning into a novel! I've always tripped over nothing. I jokingly called it tripping over the rug or tripping over my feet. I have had really bad hand tremors and they're slowly coming back. I also get those spams in my legs. I also forget easy & forgot to tell the new neuro that! I'll have to journal that so I don't forget. That helps!

I guess what I really need is information & to talk to someone else with this condition. Are there magazines that will inform a person about this? I know there are some websites. I haven't checked them all out but the ones I've seen use the medical terms. I'm hunting for one that speaks to you in plain old English. I'd appreciate any & all information you have even if it's just pointing me in the way of information.

I'm glad to meet you guys & hope to participate here alot!
Deb

Welcome kidztales. :Wave-Hello:

Someone will be along to help.

Hi Deb,
Welcome to the NeuroTalk Support Groups.

If I'm understanding your message correctly, you have been apparently misdiagnosed with MS and you are looking for information regarding Fibromyalgia?

I hope you get some answers from the tests you had done last week.

Here's the link to the
Fibromyalgia and Chronic Fatigue Forum

At the top of that page there are "Sticky" threads.
They contain useful websites and information.

If I've completely misunderstood your message and you're looking for information about a totally different condition then please post again and let us know. :o 5am here and brain not quite functioning fully.

Nice to meet you!!
 

Reply to Lara
 

Hi Lara,
Thanks for the welcome! I've been mis-diagnosed with MS for 30+ years. I changed to a new neuro about 3 years ago. He's the one who found the mis-diagnoses & that I have spino cerebella ataxia. I want to learn about what I have since knowledge is power. Are there any magazines or websites that do this? I mean ones that explain in plain English & not all those medical terms.I hope I get some answers from all those tests too.
Deb

Hi again Deb,
How are you doing?

There is straightforward info on this first site I think.
Second link is from same place but has downloadable Fact Sheets.

Ataxia causes
Ataxia resources and FAQs
From the National Ataxia Foundation.

http://www.ninds.nih.gov/disorders/ataxia/ataxia.htm
NINDS Ataxias and Cerebellar or Spinocerebellar Degeneration Information Page

Hard to find ones that are less "medical", Deb but there are some older posts here in the forums from people who have been diagnosed with spinocerebellar ataxia. If you use the search feature that I post below you can type in keywords and it will bring up those threads and posts.

NeuroTalk Forum Search Feature

You could start a new thread in either
Movement Disorders Forum
or in
General Health Conditions and Rare Disorders Forum

I would make the title "Spinocerebellar Ataxia" and that way if people are searching for this particular condition the thread will come up in the search more easily.

Edited to ask: Do you by chance have celiac disease?
Any family history of ataxia or have you had any genetic testing to determine a particular "Type" of spinocerebellar ataxia that you could have (as some are hereditary).

take care there and sorry to be so long-winded.
Lara

Similar story
 

Hello Andy,

I've never done drugs or abused alcohol but there are some striking similarities in your story.

To be brief, I lost my mum after she essentially disowned me when she became an addict/alcoholic because she started self-medicating as they say. She was ill, had Lupus, and I was her caregiver until I was 20.

I worked 2 jobs, went to Uni, and devoted my life to her. I took her everywhere she needed to go, assisted her at home, etc. I will never love anyone as much as my mother. She was the most amazing person I've ever met (and I don't use that word lightly like everyone else these days). Even though our relationship had many troubles, she loved me and she was my best friend for many years. Once she started stealing from me and inviting drug addicts over, I had to leave. After that, she called when she wanted money, would refuse to let me into her house, and even forgot how old I was and what I looked like eventually.

I got a call at work 8 years later from my old job telling me to call a distant relative. I knew immediately what it would be. I rushed to the hospital (I lived in another city) and saw my mum that night, with foam coming out of her mouth and blue fingertips after she had been taken off life support. To this day I wish it had been me.

To make matters worse, my job forced me to work the day of her funeral so I missed it and then her family stole her multi-million dollar estate from me, her only heir. They even took the photo albums.

I was hit by a drunk driver just over a year later. Many people have said to me in the years since that they can't believe I made it through all of this without turning to drugs and alcohol (I literally have no support system as I am completely estranged from all family and my friends got tired of helping me out and hearing my excuses as to why I couldn't go out). It's just never been my thing but I can understand the allure of it when in the depths of pain and despair.

I once had a gorgeous pinup/marilyn monroe body, never skinny but damn I looked good (I now realise). Inabilty to exercise has caused me to gain more weight than I could ever have imagined. I used to be pretty and talented, now I'm a horrific looking blob even though I'm vegan and only eat once every 48 hours. I hate that people think I stuff myself with cheeseburgers and milkshakes all day when I'm actually having hunger pains constantly.

I'm from the States and have lived in England for over 2 years now and I'm sorry for being an internet weirdo and sending you a friend request but I am eager to meet others in the UK who can understand and relate to at least some of what I'm going through. I apologise for such a lengthy response, once I get started it's hard to stop. I wish you all the best and hope you find some comfort here.

There is no need to apologise at all. This place is fantastic for people like us who have had a difficult time & are in need of support. Thank you for the friend request. Where are you based in England?

Any time you need to chat to someone, drop me a message :-)