Both Physical and Mental Pain is becoming much worse...What to do?

[DarkCast]

So, I am new to this forum, and I have been trying to read as much as possible. But, I couldn't find anyone that asked this question, so I am going to ask it. Or maybe someone did in the past, and it is just on many many pages back, and I did not go back far enough. So apologies to those who have been on here much longer then I if this is a repeat question.

But, honestly, it is really hard to talk about my ALS/MND with anyone outside my family (Mum and Brother), and honestly, it is hard to talk to them about it as well. As it seems like they are going to cry every time I bring up the subject or tell my Mum about something new that is happening. Simply because she is sad that she is going to have to bury her own child in a few years, which I have come to terms with. So that is the mental pain of it all. Just simply dealing with being around my family and the sad look I get when they look at me. I know they do not mean to, but I just want everyone to smile. It is like I am living through my funeral every single day atm, and it does my head in. I am literally crying just writing this and thinking about it all.

And second, the pain in my body is starting to become much worse. I hate pain medicine, so I am on a very low dose pain Medicine atm, even against my doctors wishes. I only take Norco 7.5mg/325. They have tried to get me on much stronger medicine, but I just do not want to go down that road yet, but it is quickly becoming almost to painful not to go something stronger. I would like not to if at all possible, and was hoping maybe some of you may have some suggestions. I am starting to lose a lot of the power and motor functions in my lower back, and have been in rehab to work the muscles on a regular basis. So as many of you know, Rehab = PAIN. I come out of there each day, every week, feeling absolutely worn out and just throbbing of pain all over my body. It feels like huge knitting needles, millions of them, are stabbing my muscles all over my body, and I usually end up having a semi-small seizure an hour or so later from it all.

Apologies to be very emotional. It has just been an emotional past 14 months, and I have learned to deal with a lot, but some things, you just need to ask someone else like you yourself. These are things I just cannot talk to my family about and hope that you kind people can help me out. Thanks in advance.

 

[DarkCast]

The pain comes from a secondary disease btw. As I was diagnosed with both Fibromyalgia and ALS. I was in a very bad car accident and basically just shocked my system. But I ended up tearing my sciatic nerve in both my left and right legs, and this is where the pins and needles feeling comes into play. So yeah, I know this may be a hard one for anyone here to answer. But I thought if anyone might be able to, seeing the doctors cannot even figure it out, maybe someone might have the same thing. I know this is a shot in the dark. But, I have no where else to go to be very honest. So even if none of you can answer why I am experiencing this, you might be able to point me in the direction of someone who can. My Neurologist's are even dumbfounded by it all. As they do not know why I am getting these intense flare ups of pain in my legs and back and right arm, and then as soon as it goes numb, I have a seizure. Its quite scary.

 

[DarkCast]

The reason I only mention my right arm as well, is do to the fact that I have lost all motor function in my left arm, and my ALS seems to be starting there. It is starting to even affect the vision in my left eye, and causing what I call "Twisty" vision to my Neurologist. As it seems like there is an invisible Pole in front of me and everything coming at me curves around it back and forth. Needless to say, my driving privs were taken away recently as well. So that is another reason the mental pain is a bit much. It is hard to be 32, going on 33, and to quickly be losing your grip on everything. But I guess I can look at it this way, at least I do not have pain in my left arm. It is beginning to become extremely hard to stand, and the pins and needles in my legs are becoming less intense(I am guessing, due to loss of feeling and motor function in my legs). It is mainly the ones in my right arm that are so severe that it is just too much to handle, as it surges up my right arm into my eye and causes an intense Migraine as well. I have constant Migraines as well, 24/7/365. I begin Botox shots for those in December or January, just waiting on the phone call to schedule. So I am hoping this may stop it all together. It takes me a while to type, hence the multiple posts for one post... as I am using one hand atm. But, I wanted to give you all, all the information possible to go on, to possibly help point me in the right direction of someone who may be able to help. As, like I said, I honestly just do not want to take Pain Medicine, especially when I know in a year or so, I will not be able to feel much at all. Once again Thanks to everyone on this great board. And trust... I read through post upon post before posting this... and did not find an answer to my question. And yes, I know with ALS, you do not get Pain, that it is from my Fibromyalgia. But, I cannot be the only person on here with both.

 

[DarkCast]

I am thinking I may of needed to post this in the PALS section maybe?... I am not sure. New to the forum, and do not seem to be getting any responses, even though 33 people have read it. Maybe one of the MODS could move it into that section for me or if someone sees this over the next few days and has an some suggestions for me, it would mean the world to me. I know this is not a normal ALS question, well at least not the body pain part. But even dealing with the mental pain part, any suggestions on how to cheer my family up and how to take some of the stress off of my Mum would be brilliant! Cheers.

 

[cheerleader]

Who has you in rehab? Is it a neurologist who specializes in ALS? When you describe coming out absolutely exhausted, that is a concern. Overdoing it with this disease speeds progression. Please be sure your doctor has had a lot of experience with this monster disease, or you could be in trouble.
Know you are worried about your family- we all deal with that mental pain daily. Our motto is "one day at a time. Just enjoy today." Good luck.

 

[SMP51]

I don't like what I am hearing about your rehab either! range of motion should be what is being worked NOT muscle strength.
My Pals worried about being on to much heavy meds as well, has arthritic and hip issues in addition to ALS. His neurologist explained if you are taking something to alieviate pain you are not experiencing a "high" as those addictive issues come about if the meds are no longer helping to mask pain(as in you no longer have pain to mask, you got better). ALS is not going away. There is no reason you should not be taking something to help with dealing with the discomfort and pain.... living with continues pain and discomfort causes lack of productive sleep/rest and depression.
my PALs is on oxicoton and oxicodon. if he wasn't life would be hell.
keeping on a smart schedule of pain meds makes this life thus far durable.
perhaps the sadness you see in your family is the reflection of the pain they see in you.

 

[DarkCast]

They have me on a very minimal, simple band, slow movement resistance training atm with my right arm and legs. I only do a very small amount of sets, but I always feel exhausted after it. I told my Mum today about it all, and we had a long discussion. I actually revealed a lot about myself that I had been holding back, how I felt, and some issues that had begun to start with my energy and muscle range. Surprisingly she had already noticed me having issues and just was waiting for me to say something, as she does not try to push any me in any direction and allows me to make all my own choices. Which up front, even though she is my POA and some what Care Taker now at this point, I made clear that everything down the road would be all my decisions. So it would seem you were very right SMP51, the pain I saw in their eyes, was simply the pain they saw me going through. So needless to say, we made a phone call to my Neurologist to let them know that my seizure's had increased. 3 seizures last week, and 1 already this week. And, they are beginning to last much longer, and I am losing total control of everything. Which can be extremely scary when you wake up choking on your own vomit (sorry if that is tmi). But, the seizures are more prominent when I am asleep. Which is another thing they cannot figure out. There is a lot of questions the Neurologist(s) are still trying to solve with my case over 2 years later, even though it has only been 10 months since they figured out it really was ALS. But there is so many other issues going on, that they are trying to battle everything all at one time, and some medications interfere with the other medications. It feels like an endless buffet sometimes of pills, that is why I have chosen not to go much further then the low dose Norco. But, after speaking with my Mum today, we will be making an appointment with a pain specialist as well. So now my Anxiety is super high for that, as I am not looking forward to being on a high dose pain medicine. So, needless to say, I will definitely be looking for support from as many people I can get on this forum as I go through this battle. They are still figuring out all of my issues, and it seems like every time I go to the Neurologist, something else is wrong with me. It is just so hard to deal with some days. And yes, I have read the motto here. But I am new, and it will take some time for me to really get my head around it. But, that being said, if you met me in person, I am one of the most humble people you would ever meet in life... I love life, I never get angry because obviously I do not have much time left on this planet, and do not have enough time or energy to hate anyone. So I just try to spread as much love as I can. It truly did hurt though to find out my Mum and Brother could see past the mask and could see me hurting on the inside from the struggles I was going through behind closed doors. So, as of today, my goal is to love life and to love myself as well.

 

[DarkCast]

/\ That literally took me 36 mins to write with one hand. Def miss being able to type with two hands.

 

[MaxEidswick]

>Our motto is "one day at a time. Just enjoy today." Good luck.

and IIWII ("It Is What It Is!") ...

>That literally took me 36 mins to write with one hand. Def miss being able to type with two hands.

me 2 -- get a hot key utility and dns if you can still talk.'

make sure you get a 2nd ALS opinion and from a proper ALS clinic or ALS neuro specialist, contact alsa/mda first!


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Max - Monday, October 06, 2014 12:43:42 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[DarkCast]

ahhh ok... it took me a sec to get what you meant by high off pain meds SMP51... but know what you mean now. And that is the exact reason why I didn't want to take them, because they had me on a Dilaudid in the hospital, and that stuff made me feel like crap. It got rid of the pain, but made me super sick... and then you hear all these stories of people overdosing on oxycontin. So it is all a bit overwhelming. That is why I am very hesitant to go further up, but the pain is ridiculous, especially in my neck and head.

 

[DarkCast]

Thx Max! We did, actually 3, just to be safe. My current Neurologist works out of the ALS clinic 1 hour south of me and actually travels up to the area I live in once a month to see local patients. So only see her every 90 days atm, and her assistant for my other visits. Yes, I can still talk, just now have a slight stutter and I can lose track quickly of what I am talking about sometimes if I am talking to much or to long. But, usually I can calm myself, center everything, and just focus, then come back to talking. But not always. That is another thing that has began to kind of irritate me a little, is my focus is very easily lost due to the constant pain in my head. As I have another issue where blood is going up into my head when I lay down, but not coming out as fast, and causes a ton of pressure on my eyes and brain. Like I stated, it is not just ALS, this accident caused many issues, ALS being just one. Okay...my hand is getting tired. gonna have to rest for a sec. All this typing is cramping up my hand and forearm.

 

[cheerleader]

Dark cast, resistance exercise is a no no! You should only be doing range of motion. Think you need another opinion, neurologist as Max suggested. Sorry for all the other complications with your health. Life is tough.

 

[SMP51]

yes, you need to get with your doc and pain management team and figure out what pain meds and amount will help you with out making you feel bad/loopy/groggy. It might take a little while to get the balanace right or the kind that works for you but they surely can get you feeling better than you are right now.

and no strength training, only range of motion.
don't exhaust yourself. Look at it this way. With ALS you only get "X" amount of units of energy a day, once you use them up anything else is counter productive (which is why you are exhausted after you little work outs at PT) so use those units of energy wisely...like at the pool you enjoy so much, you get relief in the weightless water and get to have some of that range of motion work.

be safe

always be up front with your mama, you cant hid things from mama...we know you better than you know yourself!
and don't feel bad that mama loves you so much she hurts for you....that is how we are made

 

[gooseberry]

Okay..resistance training with bands seems mild but can be very difficult. It depends on the elasticity of the resistance band. I will reiterate what the others have said...range of motion only. About your migraines...I get them with poor sleep quality. If you are having a lot of pain, you arent sleeping well. Poor sleep repeatedly will result in migraines. Get some pain control and ask about a med, I take topomax, to prevent migraines. Lastly, we have all been through the really low times with this disease. We are here for you.

 

[gooseberry]

Sorry darkcast, I forgot the anxiety question. Most here take one or two meds for it. My pals takes lexapro and clonazapam.