HealingWell
Search Close Search
☰

New to Healing Well...Mods and others... Please Read!

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/2/2012 7:38 AM (GMT 0)
I'm new here, and I have Cerebral Palsy, and with that, chronic pain. But I was wondering, why isn't there a Cerebral Palsy forum under the diseases and conditions section? Are there not enough people here who have the condition? Is there any way a forum could be added by a Mod or Admin?

I'm not even sure if anyone besides myself would use it, but who knows?

I came here to see if I could find people who might understand some of what I go through on a daily basis, I suppose most of us are here for that.

Thanks for taking the time to read this and hopefully I get to know some people here.

Posted 5/2/2012 1:04 PM (GMT 0)

       Good morning LexiRae!

          Welcome to our Chronic Pain forum! wink   ...every once in a while, Peter adds different chronic conditions, and or diseases to the forum list. I will make sure and pass the word along to our Admin for future consideration.

     You are most welcome to stay with us, and I'm sure you will enjoy the forum. We have wonderful warm members here...and you can always find support when needed.

     I know nothing about Cerebral Palsy...so I'm guessing that your pain come from this? Please feel free to share with us! wink

      Again Welcome!..and Enjoy!

    SE wink

Posted 5/2/2012 1:33 PM (GMT 0)
Hello LexiRae, I too would like to welcome you to the chronic pain forum. I am glad that you found us but sorry that you have to be here. I hope that you will hang out here and get to know the members. You will find we all suffer with chronic pain of some kind and totally understand what it is like living with chronic pain.

You may send the administrator an email too requesting him to consider adding a cerebral palsy forum. He has no set time of the year when he adds new forums, all done at random.

Again welcome aboard & take care...Susie
Posted 5/2/2012 3:49 PM (GMT 0)
LexiRae,

Welcome.... The other mods have already answered your questions.... but I wanted to welcome you here. I have other health issues besides chronic pain.... but the more time I spent on this particular board - I just love the people here. I think that was about 4 years ago! So.... I agree w/ sending the Admin an e-mail.... but please know you are very welcome here. We may not know everything (or anything!) about cerebral palsy.... but most of us do have chronic health issues on top of chronic pain.

Again, welcome... and look forward to getting to know you better. --Tina
Posted 5/3/2012 12:37 AM (GMT 0)
Thanks everyone for the warm welcome.

I had a bleed in my brain when I was born that caused the Cerebral Palsy, which to put it simply is a disorder defined by neurological damage of some sort. Some people with it can't walk, others it affects one side of the body, others can't speak etc. The severity varies from person to person.

My case is a little strange because the affects are almost entirely physical and my mentality is intact. But because of the brain damage I have no center of balance so I walk differently, and my muscles are very spastic, so like my muscles pull my hips out of joint so they dislocate and I have a muscle imbalance in my back...tendonitis in my ankles...muscle spasms everywhere...things like that.

And since the cause is brain damage the only thing to do is treat the affects as they happen and my body wears out. I've had some surgery and will eventually need more but for now they're not sure what to do other than try to control some of the pain so I can try to have as normal of a life as possible.

I'm in college, planning a career, have a relationship. I'm doing my best to do things despite my body and not let it rule my actions.

But as a lot of people here probably know...pain has a mind of its own and most of the time even the strongest pain meds don't "make it better, they just take the edge off"

I guess I'm just looking for others who sort of experience the same way, it can be hard to know how to deal with something thats so consuming while surrounded by people who are not afflicted with anything like what I'm going through. Most of the time I can handle things but sometimes its just...it seems impossible.
Posted 5/3/2012 6:57 AM (GMT 0)
Hi Lexi, and welcome here.

I can't relate to the Cerebral Palsy but I suffer from dystonia - in my case secondary to another neuro disease called Complex Regional Pain Syndrome. My lower body is by far the worst - esp lower legs- but my whole body will sometimes spasm and it is terribly, terribly painful when that happens.

You may have already explored these options - but is something like intrathecal baclofen an option in your case? It has not been a total solution for me - my feet and ankles are now in essentially permanent contractures and very occasionally I still get some very painful prolonged spasms and attacks of rigidity or shaking/jerking, but it is 1000 x better than it was.

Laura
Posted 5/3/2012 9:35 AM (GMT 0)
Hello LexiRae

I'd like to Welcome you to the forum also. Like the others have said, Your more than welcome to stay here in the Chronic Pain group. I've read your other post and can see already you have a lot to offer others who come here in search of help with their Chronic Pain issues. I can tell you have already made it over many hurdles that go along with Cerebral Palsy because you have that positive attitude I was talking about in another post I made recently. Kudos to not letting it rule your life. College, Wow I'm impressed. What are you taking and how much longer do you have left.

Life definitely deals each of us a different hand and you appear to be playing your cards very well. Although we don't have Cerebral palsy, Pain is Pain and, I'm sure you will find a lot of people here willing to help and support you.

I look forward to getting to know you.
D.
Posted 5/3/2012 10:28 AM (GMT 0)
Hi, Lexirae! I had a niece that was a year older than me that had severe mental & physical impairment from cerebral palsy. She passed away in a childrens home when I was 10 yrs old. She could never talk or control her movements but I still remember pushing her around in her chair and she would laugh out loud & we would have fun together. When we would leave you could hear her crying and it would break your heart. Her parents kept her at home until they were no longer able to care for her. She had no control of her body movements. I hadn't thought of her in a long time, thanks for bringing those memories back!

Sorry to get off on my own little tangent but just wanted to let you know that I am familiar with this awful disease and hope the best for you. Chronic pain is something that connects alot of us regardless of the cause.
Posted 5/3/2012 9:00 PM (GMT 0)
Laura- I've been on baclofen before for the spasms, but it makes me really sleepy. It definitely makes me too sleepy to take anything else with it, such as the pain medication. My Dr. has me on Flexeril instead, but that does not work as well or as often as it "should" it seems. Its been a really tough battle trying to find a balance between my meds. I'm really glad its given you some relief though...spasms are awful. Sometimes it feels like my feet want to curl into balls, my toes curl down and my heel wants to curl up. And my back just feels like a stone sometimes, it feels like there are knots on top of knots.

D. - Right now, I'm working on my associates degree in medical billing and coding. I have two semesters left and then hopefully I'll be enrolling at UCF for my bachelors in Health Informatics and Information management and THEN I plan to get a Masters in Healthcare Administration. My goal is to have a career working the administrative side of healthcare, particularly the billing/coding/insurance side of things. Eventually I want to run the billing department somewhere. My mind has high hopes for myself that my body doesnt always agree with!

Jag- Tangents are okay! I'm glad I could bring back some good memories. Some with Cerebral Palsy are extremely impaired both mentally and physically. I count myself lucky in that my mental faculties were spared. I would rather take all the pain in the world to my body...as long as I have my mind. I guess that's why I want so badly to "do something" with it. I know so many people who are "normal" and waste so much, while others wish for a fraction of that ability and would try to move mountains with it.

It feels good to be able to reach out to people, and if I can help someone at least a little bit because of what I go through, then that sorta makes it worth it, you know?
Posted 5/3/2012 9:30 PM (GMT 0)
LexiRae I responded to your post to Oliv28, if you get a moment please read it, lol.

LexiRae I sort of remembered a cousin having something wrong with her so I called my sister to ask what she remembered of our cousin, she had cerebral palsy. We never saw much of these two girls that were our cousins. The one in question had some pretty bad problems according to my sister. Sandy needed a lot of help even as an adult. These girls lived with their father and his wife and we rarely saw them. Sandy & I were close to the same age and I remember she drooled really bad and had speech problems. When I saw her we were little girls probably no more than 5 yrs old.

My sister says she heard that Sandy married and had children much against the advice of her drs, mainly because she was not physically capable of taking care of children.

I think its wonderful that you are in school and have a goal for your future. At least in this profession there will always be a demand for a person to do the work. A good friend of mine has her own business and she does billing for several drs offices and she loves doing this kind of work. I know that she is always busy.

Its a shame the Baclofen does not agree with you. I am on Baclofen and have to say its been one of the best muscle relaxers for me. My dr started me out on 5mg and it did nothing, so she increased it to 10mg and it does the job. I had what felt like knots on top of knots. I could not tolerate Flexeril at all.

Take care...Susie
Posted 5/3/2012 10:22 PM (GMT 0)
Hello everyone. My name is Tiffany and I am new here. I am not new to pain, but my depression as got the better of me today and I thought that maybe reaching out to others who understand is a good way to just get my feelings out. Helping others is also a good way to get out of myself, so I hope I can give some sort of support to the best of my ability.

I had an emergency surgery back in 2003 and have not been the same since. I had a great job, living in san Francisco and had just an amazing life. Now I live in a pretty isolated place in Oregon with my mother now for 6 years. My family Nd friends keep me going and if it weren't for them, I would have taken an exit long ago.

I am sure you all have been to endless doctors, tried so many different meds, treatments, spend several thousands of dollars on treatments, etc. just the thought of where I have been boggles my mind. After 8 surgeries! I did try one thing that did work. I have nerve pain in my lower abdomin and now my pain is spreading, but after using the Calmare machine, I felt so much better. I had 10 treatments in CT, which is far from me and now I am trying to get a dr here in southern Oregon to buy one. After your 10 sessions, it is imperative to go back and do booster treatments. Right now traveling is too hard on me and I can't afford to travel, so i am back in terrible pain. If you are interested, please go to the web site to see if there is a machine near you. There is now a billing code for it for insurance purposes, it is FDA approved and the military just bought 6 for our vets.http://www.calmarett.com/

I am not trying to sell you anything, I am just reaching out to those in pain and trying to help whomever I can.

Thank you for having this site. I really feel for everyone in pain. We are a large, but rare group of people.

Sincerely,
Tiffany
Posted 5/3/2012 11:20 PM (GMT 0)
Lexi, it's a shame you can't tolerate the baclofen. The beauty of the pump for me is that it's a tiny, tiny dose compared to taking tablets... I was on 60mg a day with it doing nothing - and now on about 1.5mg a day. I know that's a massive dose too - most of my doctor's baclofen patients are only on 700-800mcg!!
Posted 5/4/2012 1:16 AM (GMT 0)
well, if I were to ever have a pump, the baclofen may become an option again in the smaller doses.
Posted 5/4/2012 6:20 AM (GMT 0)
Hi LexiRae and welcome to Healing Well Chronic Pain Forum!  Spasms can be really difficult and also very painful! I get them every where and when the muscles tighten up into a knot, the pain can just about be unbearable, so I really can empathize with you about the spasms! I am sorry that you can not tolerate Baclofen, I have heard other people complain about it making them sleepy too.! I guess I am very fortunate as I haven't had it affect me that way, I take 30mg of it every eight hours and it has been a real Godsend for me, I still have spells when I still get some muscle spasms but not nearly as often or as severe as they used to be, before I started taking it. It did take awhile though to get me weaned up to the point where it became effective in relieving my spasms!

 

Anyway I wanted to Welcome YOU to the forum, and I do hope you stick around and become an active member of our family here! No matter what the cause is of your pain, that is one thing that kind of links us altogether, in that we can all empathize and support each other! I do want to tell you how extremely happy I am to hear that your in college, and your plans for your future! With every thing you have to cope with on an every day basis with your condition, I think it is really outstanding that you  are not letting your Cerebral Palsy keep you down and from accomplishing your goals! I really do Commend you for that! I wish you well on your endeavor and hope that you are successful in meeting all your goals! Good Luck to YOU!

 

White Beard

Posted 5/5/2012 12:35 AM (GMT 0)
Honestly sometimes, when my pain is...well...too much. I wonder if I'm doing the wrong thing with college and the career etc. But I know if I didn't have those things...I would not have the strength to endure the rest. Knowing I have a goal outside of my condition helps, but my condition also can get in the way and its extremely frustrating.

I'm not sure if people who have never had a spasm can understand just how truly painful they are. I'm really good at "sucking it up" when others are around, so I guess because I don't always show how much pain I'm in, people don't think I'm in much at all.

But I'm not the person to wear things on my sleeve. I will go somewhere by myself when I really hurt or it makes me cry, and by now it takes a lot to make me cry.

I just wish my family understood a little better. It seems no matter what I tell them, they just don't get what what I'm telling them translates into. ie "no I can't go to disney and walk around all day" or I cant tell you how many times I've BEGGED them ALL not to touch my back when they hug me or pass by me etc. Because it's so incredibly painful. Or when I'm getting sick, they all tell me just to either get over it or go to the hospital.

Now I try to get sick in as much privacy as possible. Getting sick from the pain meds is just a normal part of MY life, which I've also said repeatedly. It just gets so...aggravating.
Posted 5/5/2012 7:23 AM (GMT 0)
You know LexiRae we all need to have goals in our life, and I think yours are terrific, I am sure it is very difficult for you sometimes, but from what you have written I think you have a really good "Head" on your shoulders and have a firm grasp of what it will take for you to be successfull. You will make, and you have all our support attaining your goals!

 

I think "sucking it up" can have a negative side affect too, I also do that, and it sounds like you do not want to show your pain to others, I think that is pretty common for allot of us with chronic pain, and especially when your having those terribly painful muscle spasms!  The bad thing is, by doing that, ( not showing the pain and how bad the muscle spasms really are) People ( especially family) just don't get it when we try telling them how painfull things really are for us! We are telling them one thing but they are seeing something completely different! They  do not see the pain we are feeling because we hide it from them! Soooooo we are giving them mixed signals! what should they believe ?????? I do it to, and then I get aggravated when they don't seem to care, or believe or understand when I tell them about my pain and how it affects me!! It took me along time to realize that! But I too, still hide  my pain and want to be alone when I am having a bad time with spasms! I get them every where but especially when I get spasms in my throat and I wretch and gag, and the muscles in my neck tighten up something fierce, it is so very painfull, but immediately I try to hide and get away from every one so they don't see this happening. I mean I think it is  embarrassing to have people see me be bent over wretching and having extreme pain with needles and pins and electric type shocks going through my upper chest and upper back! I do not want people to see me like that! But really  without them ever seeing it happen, how can they understand what I am trying to tell them about????? Maybe it would be helpful especially with your family and loved ones, if they seen you when your really having a rough time of it with your spasms and pain. Something maybe to ponder and think about???

 

Anyway I do understand what you have said, and  I can really empathize! I guess it is a problem that really doesn't have any easy solutions. But I do think it helps to talk about it, with people that can understand. It does for me anyway! LOL It is aggravating LexiRae, I guess we can all just be aggravated to together, at least we are not alone feeling this way!

 

White Beard

 

 

Posted 5/7/2012 1:48 AM (GMT 0)
The times I do stay around my family when things are really painful, they freak out. They either want to send me to the hospital (which would no absolutely no good)

Or they feel like I'm weak and can't handle my own life (my mom thinks I should not be going to school, which is ridiculous because my GPA is 3.7. it might be stressful but I can do it and it keeps me from going crazy just sitting with the pain).

And also, if I show my pain they then assume I can't do ANYTHING and also won't invite me anywhere. So then I get more isolated than I already feel.

There just seems to be no happy medium with my family. My mom is in complete denial no matter what (mostly because shes extremely involved in her own "universe" and if I don't conflict with that I'm really not on her radar. She's always been this way.

My bf is the only person to see pretty much all of it, and he tries to be the referee, telling then he'll know if I need to go to the ER, and if I want to go to Walmart that I'm capable etc.

It helps some but its still frustrating.
Posted 5/7/2012 6:06 AM (GMT 0)
LexiRae I am sorry that your family reacts that way and feels that way about  you, I do hope that some of it is just your preception, but regruardless it does make it tough for you!  But I will tell you, as someone that is allot older than you and  having two daughters that are both are college graduates and are very successful. I think it is GREAT that you are going to college and going for a degree!  And I am sure that every one else on this forum would agree with me! Just from your brief posting, I sense that  you are a very smart, courageous, and determined young woman! I encourage you to keep doing what you are doing, reguardless of what your family and possibly friends might think or say! You have your dream, and only YOU can make it a reality, so don't let anybody or anything keep you from it if you can!!

 

LexiRae you said ("And also, if I show my pain they then assume I can't do ANYTHING and also won't invite me anywhere. So then I get more isolated than I already feel") I am not sure that is completely true, but I do understand how and why you think it is that way. I feel you  should be able to show your pain to your close friends and family, and not only tell them what you are capable of doing but also showing them by doing it!  It might not always work of course, but if the person is really close and understanding and knows you really well there should be no problem. Remember don't "assume" anything, your not a mind reader, and YES some might feel you might not be able to do anything, but I would just about bet those are just a  Very very few! I am just wondering??????Are you not.... in away, also isolating yourself by not showing your true self (including your pain) to your close friends and family? Just a thought! 

 

Anyway you have all our support here!  Maybe ( hopefully) it helps you, to vent your frustrations here, here to people that really do care!

 

I do wish you the best!

 

White Beard

Posted 5/7/2012 6:45 AM (GMT 0)
It's not so much assumptions, as experience. Just because I *should* be able to rely on my family, doesn't mean I can. I haven't seen my biological father in 3 years...My stepdad was abusive...my mom has basically "checked out" when it comes to the logical and realitic, in order to deal with everything, and unfortunately my condition is both logical and real.

I just don't have any family close enough to be as perceptive and receptive as you would think family would be. Whether I show my pain etc or not, either way there isn't very much understanding going on, so the best I can do is try to keep myself in the "loop" and it seems like when my pain is present, that doesn't happen

They know me in the sense of my favorite football team and that I love pork roast...but that's not really helpful sometimes.

I think there's fear involved. Both friends and family don't seem to know how to handle me...the one with the incurable condition that's going to exist forever and be debilitating. But no matter how many times I say I don't need to be "handled" it doesn't change things.
Posted 5/8/2012 7:06 AM (GMT 0)
Well LexiRae I am sorry that your family is not there for you, it really sounds like you have had to be self reliant, I know this forum is not exactly like having family and friends right there with you, but I know for me it is nice to have the people on this forum for support. The people here have helped me get thruough some pretty rough times. I do hope we all can do the same for you.

 

You know LexiRae I think your right. people do have fears, and that is a pretty common thing for most people, when they see or are around somebody that has a condition that makes them different from them, they often don't know how to approach or deal with the individual. You would think education would be the answer, but unfortunately that doesn't always work!  I wish there was some way to get through to people that your no different than anybody else, you just might have to approach doing some things a little differently! I guess there is no easy answer, I just hope that you do not withdraw from being around people because of their reactions.  You are right you do not have to be "handled"! just understood, and accepted!

 

White Beard

✚ New Topic ✚ Reply