Proof of Pain Needed

[KimT]

I need help. I need to give my ALS doctor evidence that this disease comes with pain, even in the early or mid stages.

Please give me a short post, the type of pain you experience, and the clinic where you were diagnosed. If you want to mention your specific doctor, even better.

ALSO IMPORTANT: What helps it?

CALS - please help.

If you don't have pain, no need to reply.

I appreciate it.

 

[ehd42]

Hi Kim,
Please review the following articles regarding ALS and pain, I think you may find them useful and they may help educate your doctor.

https://www.hindawi.com/journals/nri/2011/403808/

Pain in ALS: What the Research Shows | MDA/ALS Newsmagazine

Beat Wishes

Eliot

 

[KimT]

Thanks, Eliot. He has the research but refuses to acknowledge that the pain itself can cause one to stop functioning. I've heard, "your pain level doesn't match your strength." He actually didn't test my back strength which is the major source of my pain. He knows that I interviewed 250 PALS and CALS (with a lot of help from people on this forum, especially Tillie) and put together an awareness paper. Now, someone from my local chapter wants to present this paper in a public health forum. We also are trying to get a neuro to speak on pain at our chapter and I found one willing but he is not an ALS specialist.

I'm uploading the document one more time for the new people in case they want to add or give me their story. I have one more story of a man who just passed away. He presented with back pain and had horrible pain throughout the 30 month fight. Mayo identified weakness in his trunk and it only took 3 months for him to get a diagnosis. He used Oxy in the beginning, then got relief with medical weed in combination with a patch. In the end he was using morphine, not for breathing, but for pain.

 

[lgelb]

Kim,
What action do you want this guy to take as a result? We could probably be more helpful knowing more about the end game.

I don't see why your back strength should or would correlate w/ your pain level. But it also seems like you had several pre-existing conditions that are likely interacting with loss of musculature and decreased mobility, leading to an increase in pain. That seems axiomatic -- is that really in question?

Best,
Laurie

 

[tripete]

Kim, I go to Hershey in Pennsylvania. Pain is DEFINITELY part of ALS. I have written about this before. Here is what I wrote:

Pain and ALS
The experts and the different websites that we read will all tell us that the malfunctioning motor neurons and subsequent muscle wasting is not painful. And while technically this is true it is also misleading. As in my experience ALS is very painful.

Physically -

We go through excruciating muscle cramps in every imaginable part of the body. This morning I was awoken by my left forearm cramping so bad that it caused my fingers to curl and lock. While this is not the motor neurons dying or the muscles wasting away, it is caused by ALS. What little muscles I have left in my arm have to do extra work to just function during the day. That, with the work that the fasciculations constantly put on them, cause them to fatigue and cramp. The worst for me is when my neck and jaw cramp and lock up.

We go through extreme headaches. These headaches are most likely caused by CO2 building up in our blood as we sleep. This is caused by our breathing muscles not properly expelling carbon dioxide. Again it is not the motor neurons acting out or the muscles dying, but it is a direct result of these things happening that causes our diaphragm to no longer function, causing us to not properly remove the CO2 from our body, leading to incredible head aches.

We go through joint and complimentary muscle pain. As certain muscles die, it puts additional strain on our joints and other muscles. Last week the muscle on the top of my left foot was in extreme pain. This was caused by the other muscles around my foot weakening and being dead, putting more strain on the small muscle at the top of my foot. A muscle not meant to do the work that it now has to do. Again this is not pain from motor neurons dying, or muscles dying, but it is caused by those things happening leaving our bodies in a weakened state.

We go through coughing and joking fits. I do not know why our bodies secrete so much phlegm but they do. It is in some way a direct effect of this monster. It is painful in the cramps, the headaches, and the soar throats that it causes. Motor neuron or muscles dying may or may not be the cause but either way it is painful.

Mentally -

I cannot even begin to explore this. The anguish our minds go through and that of our loved ones is more sever than any pain that can be imagined. We waste away a little more each day and can do nothing to slow it or stop it. It is truly out of our control.

Conclusion -

There are of course Medications, the Bipap, Venting, Feeding Tubes and other things that can help manage all these pains. These are all viable options and good for some. For some of us though, we choose to live with the pain. For me the mental clarity is worth the pain. I also choose to "fight" this disease by letting it take its course. I will, by Gods Grace and Mercy, try to serve my family with any form of energy that I can muster. I will not let ALS take away my love for them by making me mean and bitter. The pain will not negatively effect who I am. I cannot stop ALS, but I can define who I am and what my actions will be. It is all that I have.

 

[KimT]

Peter, Your narrative is part of my document. There was another patient with lung onset who had terrible pain in his limbs. He could still walk and type but had horrible back and leg pain throughout the course of the disease. Once his limbs were paralyzed, the pain lived on. He refused non-invasive respiratory treatment because he just wanted relief from the pain. He reported taking 15 mg Oxy every 6 hours around the clock to keep him comfortable. He is now using Bipap because the pain meds helped him so much he thought he could engage with his family and friends.

Laurie, My end game is simple. If I have co-morbidity that has not yet been identified, such as another autoimmune disease, I want it diagnosed and treated. I want my doctor to acknowledge that falling and spraining my ankle can, indeed, make my back pain worse since my gait is now off, when I'm out of the wheelchair. Finally, I want my doctor to know that pain management can make the difference between a horrible day and a decent day. I did what he said. I was evaluated by a PT and the only thing she said was that I needed a mobilized wheelchair ASAP. She said my back muscles were weak.

My ALS doctor was shocked that I went from a normal gait in July to a wheelchair in September.

 

[lgelb]

Kim,
Thanks for clarifying. Without being flip or minimizing your pain, a couple of comments about these goals.

If I have co-morbidity that has not yet been identified, such as another autoimmune disease, I want it diagnosed and treated. That isn't going to happen in an ALS clinic. I would consider the odds that you have another treatable autoimmune disease low. Still, to rule out hidden conditions in your case, I would see a rheumie.

I want my doctor to acknowledge that falling and spraining my ankle can, indeed, make my back pain worse since my gait is now off, when I'm out of the wheelchair. If your doc can't acknowledge that without "proof," I wouldn't be visiting him any more. If you want better pain management, I would see a physiatrist or an orthopod with a back specialty (probably a spine clinic).

Finally, I want my doctor to know that pain management can make the difference between a horrible day and a decent day. Ditto -- what point does schlepping back to this guy serve?

I guess for me at the end of the day, the effort in trying to educate someone behind the curve, given your limited time, would be reallocated to finding and leveraging better resources. I admire your advocacy but sometimes it's about doing what's best for you.

Best,
Laurie

 

[swalker]

Kim,
If your doc can't acknowledge that without "proof," I wouldn't be visiting him any more.
Laurie

I think this statement from Laurie pretty much captures my thinking on the matter.

Steve

 

[Nuts]

Kim, please tell your doc I said he's a jerk.

ARGH. Seriously? Why has he not sent you to a pain management doc if he won't treat your pain? Is he seriously an ALS specialist?

OK, had to vent. My husband has experienced horrible cramping from muscles that get overworked with the slightest use. As has been discussed in threads here before, the cramps across his chest/stomach are the worst. Three minutes of cramping causes pain for days. Pain in joints that are no longer supported by muscles makes him miserable. Pain in his feet after a day of not moving keeps him awake in agony if he doesn't take oxycodone. He doesn't always let me know of his plain because he wants me to sleep. Pain in his butt from being in the same position all day sends him t bed much earlier than he should be there,

Is there anyone else nearby who can treat you?

I'm so sorry you are dealing with this.

Becky

 

[affected]

I remember when you went to that pain management clinic and it was gruesome.

I do feel you suffer more pain than most PALS, but mostly because it is in the trunk of the body. Of course the ankle injury has only increased the pain. Same for Chris when he ruptured the tendon in his shoulder and broke ribs - that meant pain that was never going to resolve.

Some PALS actually have very little pain. I believe, but could be totally wrong, that it's related to spasticity.

I see PALS in video with no real spasticity and they are like floppy dolls - very emaciated with muscle wastage, but loose little muscles. I have watched video of them having some personal care done and transfers etc.

The way this is done for them would have been impossible for Chris who had a lot of spasticity causing frozen joints and putting him at huge risk of ruptures if he were not treated with extreme care.

I wonder if you need to think about another doctor if you can, because of the energy it will take you to educate this one, or more importantly to get to the root of things and get some relief.

 

[KimT]

This doctor is well known and highly recommended. Enough said.

My local neurologist has done so much more for me. He specializes in pain management and is compassionate. He added neurontin to the Oxy to see if it would help. I take very, very small doses of Oxy.

Tillie, it's odd but my joints are very loose (except for the sprained ankle one). I can even hyperextend my fingers and make a tight fist in both hands.

Yesterday my back felt better so I went in the heated pool and hot tub. Today I can barely move because it feels like someone clubbed by back and my neck is sore, too. I was only in the water 15 minutes and it felt good. I did not swim, just enjoyed the feeling.

I know I'm a very odd case. I've been diagnosed with fibromyalgia years ago and had frozen shoulders (both sides). Doctors thought it was from an injury at C-5,C-6 but MRI showed torn rotator cuff and a bunch of other things in shoulders. That was five years ago.

I've just never had this kind of pain. I got so desperate I let someone bring over an infrared blanket to try on my back. I read it was contraindicated in autoimmune diseases. I'm at a point I'll try anything to get rid of this pain or, at least, reduce it to a point where I can enjoy my friends and laugh again.

The thing that doesn't make sense is that I still have function. My ankle seems to be doing better and I can walk. My trunk is strong enough to bend over without falling and actually do a sit up. I'm not "testing" myself like I was a year ago because I think I made things worse using the grip strength monitor for over a year.

 

[affected]

Your pain is very different to what most PALS report Kim.

I still feel what I said about pain and spasticity holds because you don't have pain in all those loose joints, and it doesn't sound like you have a lot of spasticity (which is an increase in muscle tone).

For most PALS heat, such as that hot tub would be very relieving.

How do you get in and out of the tub?

 

[lgelb]

Hi Kim,

I probably asked this before, but since heat seems to help, do you sleep w/ a low-voltage heating pad on a low setting? This helped my husband, who had a connective tissue disorder + herniated disks + ALS. You can adjust climate control in the room to offset.

As to your ALS doc, I'll stand by the statement that life is too short to fool w/ HCPs who don't get it. If we hadn't left behind several in that category, including those of international repute, Larry's quantity and quality of life would have been vastly reduced well before ALS. And as we've discussed before, if an ALS clinic isn't helping, why go?

 

[KimT]

Your pain is very different to what most PALS report Kim.

I still feel what I said about pain and spasticity holds because you don't have pain in all those loose joints, and it doesn't sound like you have a lot of spasticity (which is an increase in muscle tone).

For most PALS heat, such as that hot tub would be very relieving.

How do you get in and out of the tub?

Tillie, I can actually climb the stairs in and out of the hot tub. It is flush to the floor and the stairs go down into it. It has two grab bars on either side. Fred thought he'd need to help me but I made it.

 

[KimT]

Hi Kim,

I probably asked this before, but since heat seems to help, do you sleep w/ a low-voltage heating pad on a low setting? This helped my husband, who had a connective tissue disorder + herniated disks + ALS. You can adjust climate control in the room to offset.

As to your ALS doc, I'll stand by the statement that life is too short to fool w/ HCPs who don't get it. If we hadn't left behind several in that category, including those of international repute, Larry's quantity and quality of life would have been vastly reduced well before ALS. And as we've discussed before, if an ALS clinic isn't helping, why go?

Laurie, I've been using a heating pad every night for about a year. It helped even before my back got bad. I set it to a low heat but it auto turns off after two hours. When I wake up, I just re-set it. I also use it at a higher setting in the lift chair on my low back even though the lift chair has heat.....the pad works better. As soon as I get up from the chair, Ace jumps on my pad so I got him one, too. That infrared thing worked very good. Apparently it's a huge cover that has four attachments for limbs. One wrapped around my leg and ankle and it felt so good.

I wish I could find a larger pad. I got the extra large size. I'd like one that went from my mid back to my feet! Maybe some kind of heating blanket would help.