ALS Specialist denies pain related to disease

[KimT]

Hello,

Since my dx I've been to three ALS Specialty Clinics. One was strictly for a second opinion and it was out of state.

Two weeks ago the doctor I ended up with (since my diagnosis) told me that the level of pain I was experiencing did NOT happen in ALS and said "pain other than cramping comes at the end of the disease when the muscles have atrophied a great deal and patients become unable to move at all." I told him the pain in my trunk coincided with overuse and weakness and my sprained ankle was not getting better even though the swelling had gone down. He said "he didn't think it was the ALS". I told him about the research I had done and the interviews where MANY PALS had bad pain with ALS. Two people in my local group were on pain patches long before their limbs were paralyzed. He actually said, "I doubt everyone you interviewed actually had ALS if their pain was that prominent and especially those in other countries."

He then went on to suggest I get further testing to locate the source of the pain because it could be an autoimmune disease (since I already have one) and have a strong family history of autoimmune diseases. He said another specialty might be able to help my pain. He also said I needed another complete Pulmonary function test because of the multiple breathing issues I have had since onset. I agree with him on that.

So basically my diagnosis remains the same but now I have "other medical problems" on top of a motor neuron disease.

I watch other PALS do things, go out, travel. But I'm telling you I was a very tough push through it type of person who was extremely active and robust. Gaining 30 pounds probably didn't help much but this is the most horrible pain I've ever had and I can no longer tolerate anything other than slippers and socks. I seem to walk better in them. My back hurts even with Oxy.

I guess I should have put this in vent. Feel free to move it. He didn't think I was depressed but I am.....I just hide it well so my pain won't be dismissed as depression. I wasn't depressed before the pain started.

 

[affected]

I'm so sorry Kim.

This disease just takes and takes and the differences between PALS is astounding.

I do think your trunk pain has been more atypical of what most PALS experience however I can't tell whether it is ALS related or something else. I can't imagine your frustration at not being able to pin a definite cause, nor get good relief.

That doctor was telling it true to a degree, but he made it too black and white, and then he took away any validation by suggesting the PALS you have talked to extensively were not PALS at all.

Nothing wrong with this thread being in this section IMHO xxx

 

[Atsugi]

There were many times we raced home because Krissy was in pain and needed to lay down. With paralyzed legs, she lost muscle there, and sat with her butt bone on the ROHO, which sometimes was painful. This was in the middle of her progression. Then, of course, there was painful swelling of the feet, and painful joints from disuse.

In our case, it was more accurate to say that ALS did not cause pain until the paralyses set in.

 

[Texas Quilter]

Kim - how frustrating that your doctor does not listen! I have been dealing with lots of pain myself. Sometimes really sore muscle pain - which I'm guessing is because one muscle is overused because the other is gone (or nearly so). And of course the cramping issues. A doctor at my ALS clinic said there's no pain with ALS also -- but I've talked to others at the clinic who are experiencing pain. Nice to know I'm not nuts (on top of everything else). My pain often prevents me from sleeping. I've also get some burning nerve pain in my thigh -- which is due to another problem. I hope you can find ways to get some relief! - Dianne

 

[Nuts]

Kim, of course PALS have pain because of loss of muscle. Where does this idea of no pain come from? Perhaps some of these docs are used to paraplegics who have no feeling in those frozen body parts.

Having said that, I'm also a big advocate of using other specialities when called for. My husband goes to the pain specialist at the Duke Spine Clinic. He's had two rounds of injections in three different areas, and they have worked wonders.

Go ahead and ask him which specialty he thinks you should consult. At the very least get a referral for pain management.

Becky

 

[KimT]

Kim - how frustrating that your doctor does not listen! I have been dealing with lots of pain myself. Sometimes really sore muscle pain - which I'm guessing is because one muscle is overused because the other is gone (or nearly so). And of course the cramping issues. A doctor at my ALS clinic said there's no pain with ALS also -- but I've talked to others at the clinic who are experiencing pain. Nice to know I'm not nuts (on top of everything else). My pain often prevents me from sleeping. I've also get some burning nerve pain in my thigh -- which is due to another problem. I hope you can find ways to get some relief! - Dianne

Hi Dianne....nice to see you post. The pain keeps me up, too....but at the same time prevents me from wanting to get out of bed. If it weren't for the meds, I probably wouldn't get out of bed. but I have to get out to the kitchen to get them.

 

[KimT]

Kim, of course PALS have pain because of loss of muscle. Where does this idea of no pain come from? Perhaps some of these docs are used to paraplegics who have no feeling in those frozen body parts.

Having said that, I'm also a big advocate of using other specialities when called for. My husband goes to the pain specialist at the Duke Spine Clinic. He's had two rounds of injections in three different areas, and they have worked wonders.

Go ahead and ask him which specialty he thinks you should consult. At the very least get a referral for pain management.

Becky

Becky, I don't know where the idea of no pain comes from. If they could just be in my body (even before the last ankle sprain) they would understand. He thought I should consult Osteo and Reumy.

I so wish I had Dr. Bedlack for a doctor and could get to Duke Spine Clinic.

 

[preacherman]

Guess we should define 'specialist'... probably much like an 'expert' I suppose.

I am in agreement with Becky... To me, just by the nature of the disease, I don't see how anyone in the know could expect that there would be no pain involved.

Everyone is different and everyone progresses differently.
I could see how a very rapid progression could be without much pain because things are moving so quickly that the entire muscle groups completely fail before they have the chance to be stressed or overworked by the gradual loss of individual muscles in the group.

Many many individual muscles have to fail before an entire muscle group will fail so I would think that in the time that the many muscles within a group are starting to die the rest of the muscles within the group are being overworked by just a little effort.
Not to mention the joints, tendons and adjacent muscle groups that are trying to compensate for the loss of other muscles.

How could this not result in pain and general fatigue?
With this in mind, depending on how slow the progression is, I would think that one could be in some sort of pain during most of the course of the disease.

For me, my shoulder is in pretty much constant pain and has been for several months.
When I've been working much at all my back will hurt for a few days after.
When I stand still for any period of time at all my hips will start to hurt and, depending on how long I will just stand around, they may hurt for days after as well.
Walking.... same story, walking a little is ok, but if I walk a lot my ankles and feet can hurt for days.

 

[affected]

preacher my husband was rapid progression and he suffered shocking pain, I'm not sure why you would think rapid progression wouldn't.

He had a lot of spasticity and this caused joints to freeze despite daily massage and ROM, as he rapidly lost muscle mass.

Horrible what this disease does.

 

[preacherman]

Tillie;

So sorry about what you and Chris had to go through.

I believe that it is truly the CALS who suffer the most.
Physical pain is temporary, but emotional scars last a lifetime.

I am sorry that I worded my statement poorly;
I did not mean to suggest that someone with a rapid progression should not have pain, only that I could understand how it could be that someone with a rapid progression could get by with little pain.

When it comes down to it, with spasticity, cramps, stresses on joints and bones, etc. I don't see how anyone could believe that this disease would be painless, or relatively painless.
True, the muscles don't hurt when they die, but when they die, something else has to take up the slack.... until there is nothing left to do so.

 

[gooseberry]

Steve had horrible abdominal pain from spasms. Sometimes you could see them and sometimes they were really deep. They were some of the worst pain he had...

 

[swalker]

Kim, I agree with everyone else that MND can and will cause pain.

I also think your doctor has a valid point (though, I also think he could have presented that point just a wee bit better).

Having MND does not prevent you from having something else.

Like you, I have Meniere's disease. Like you, I also have an autoimmune disease (in my case, Mixed Connective Tissue Disease, with symptoms of Rheumatoid Arthritis, Lupus, Sjogren's Disease, Scleroderma, and Polymyositis). Unfortunately, pain goes along with my autoimmune disease.

I have decided that I want to keep my head as clear as I can. Therefore, I have declined opioids to control the discomfort. Non Steroidal Anti Inflammatories have caused some kidney damage, so I can no longer take those (though they were wonderfully effective when I could). I now moderate the discomfort by taking tylenol.

I recognize that the type and level of pain I have is very different from yours. I don't have debilitating pain, and the way you treat your pain will certainly differ from the way I handle mine. My point is that the pain you are describing could be coming from something other than MND and there might be viable options for controlling that pain.

Therefore, I encourage you to follow your doctor's advice and seek out the opinion of folks in Rheumatology and Orthopedics. I know someone who had pain like you describe and it turned out the be shingles.

I think if you often and keep you in my prayers. Let us know what you find out!

Steve

 

[KimT]

Steve, As always your posts are so thought out and helpful. I am going to follow through and have some blood work already scheduled.

It's tough when you have multiple health issues that complicate treatment options.

Thank you for your encouragement and especially your prayers