Old 01-16-2018, 12:13 PM #1 (permalink)
Goldie1027's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Deptford
State: New Jersey
Country: US
Interest: I have been diagnosed with ALS.
Posts: 5
Goldie1027 is on a distinguished road
Goldie1027 Goldie1027 is offline
New Member (Say Hi)
Goldie1027's Avatar
Join Date: 2018
City: Deptford
State: New Jersey
Country: US
Interest: I have been diagnosed with ALS.
Posts: 5
Goldie1027 is on a distinguished road
Default Severe pain

Hello. I wondered how many of you have pain and if so, what makes it better. I have like chalie horses in my arms. It feels like someone has an ice pic to my shoulder and my fingers hurt and are stuck like I am holding a ball. That;s just my arm. If I do exercises it's hit or miss. sometimes it works.
I can take pain killers like oxycodone, but I still have the pain.
Goldie1027 is offline  
Old 01-16-2018, 02:21 PM #2 (permalink)
KarenNWendyn's Avatar
Very Helpful Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,073
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
KarenNWendyn KarenNWendyn is offline
Very Helpful Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,073
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
Default Re: Severe pain

I get Charlie horse cramps all the time in legs, hands, and chest wall muscles. Mostly they are brief and respond to stretching, but my legs are achy early in the AM when Iím in bed. I use CBD oil daily which I think helps. My neurologist recommended Magnesium Oxide 400 mg at bedtime and Vitamin B6 50 mg daily. Some people also use Mexilitine for cramps. I recommend against opioids like Oxycodone for daily pain or cramps unless youíre in a hospice situation, mainly due to problems with respiratory and bowel suppression and drug tolerance.

The problem with the fingers sticking could improve with an anti spasm drug like Baclofen or Tizanidine plus hand splints at night. Sounds like ROM/ stretching might help your shoulders.
KarenNWendyn is offline  
Thanks from
Goldie1027 (01-19-2018)
Old 01-16-2018, 10:24 PM #3 (permalink)
chally's Avatar
Very Helpful Member
 
Join Date: 2015
City: renick
State: wv.
Country: US
Diagnosed: 02/2015
Interest: I have been diagnosed with ALS.
Posts: 1,178
chally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud of
chally chally is offline
Very Helpful Member
chally's Avatar
Join Date: 2015
City: renick
State: wv.
Country: US
Diagnosed: 02/2015
Interest: I have been diagnosed with ALS.
Posts: 1,178
chally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud ofchally has much to be proud of
Default Re: Severe pain

Tumuric hashelped me right from the start, 500 mg daily.
When I ran tri athletes races I always carried small packet of muster and when cramps came on one squirt and in min it’s was gone.

Worth a try.
chally is offline  
Old 01-17-2018, 01:28 AM #4 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,308
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,308
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Severe pain

Welcome, Goldie! Feel free to start a thread to introduce yourself, or tell us more about yourself in this one. Massage and someone doing passive range of motion exercises is invaluable. A good PT can train whoever's around to do them, under your home health benefit, or some MTs also make house calls, which you may or may not get partial reimbursement for depending on whether your plan has a massage benefit. Make sure your arms/elbows are supported wherever you sit.

I also recommend a low voltage heated mattress pad. And Biofreeze and similar compounds help some people if you can tolerate the smell, but of course you can't mix those with heat.
lgelb is offline  
Old 01-17-2018, 04:51 AM #5 (permalink)
tripete's Avatar
Senior Member
 
Join Date: 2014
City: Lancaster
State: PA
Country: US
Diagnosed: 12/2014
Interest: I have been diagnosed with ALS.
Posts: 995
tripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud of
tripete tripete is offline
Senior Member
tripete's Avatar
Join Date: 2014
City: Lancaster
State: PA
Country: US
Diagnosed: 12/2014
Interest: I have been diagnosed with ALS.
Posts: 995
tripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud oftripete has much to be proud of
Default Re: Severe pain

pain is just something we have to work through. it is now our normal.
tripete is offline  
Old 01-17-2018, 02:25 PM #6 (permalink)
KarenNWendyn's Avatar
Very Helpful Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,073
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
KarenNWendyn KarenNWendyn is offline
Very Helpful Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,073
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
Default Re: Severe pain

If the above suggestions (especially the occupational and physical therapy interventions) fail to relieve pain, consider a trial of either Gabapentin or Cymbalta. These are non-narcotic prescription meds which are useful for some people in chronic pain management. Cymbalta (Duloxetine) also works as an antidepressant. For intense pain localized over one specific region (like a shoulder, hip, or spot on the back), Lidocaine patches may help.
KarenNWendyn is offline  
Old 01-17-2018, 05:55 PM #7 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,896
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,896
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Severe pain

I take a lot of magnesium since I'm on Remeron, an antidepressant that can cause constipation. I take 1,200 mg a day. I also take CBD Oil, a small amount of medical cannabis, tylenol (no more than 2 a day), tumeric, and an occasional Advil. When it gets bad I up my dose of Valium and add Gabapentin.

I have all kinds of pain. I have moderate to severe joint pain in every joint. MRIs showed torn rotator cuffs on both shoulders and tendonitis in both ankles. In fact, long before my dx I had tendonitis, no doubt from sports, falls, and car accidents.

My whole body hurts. When it gets where I can't walk, I take an Oxy to break the pain cycle and it seems to work.

I wish someone would invent a toe splint that actually worked. I've spent several hundred dollars on all kinds of splints for my curled toes and nothing helps. When they cramp, it's agony.

My doctor told me to go to a podiatrist to see if she/he knew of something that would help.
KimT is offline  
Old 01-17-2018, 11:08 PM #8 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,308
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,308
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Severe pain

Kim, have you tried pressure boots with or without a piece of plastic used as a "splint" on the outside for more structure? Keeping the arch elongated can help prevent the toe curling.
lgelb is offline  
Old 01-17-2018, 11:45 PM #9 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,964
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,964
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Severe pain

Kim the toes curl because of shortening of the wasting muscles in the lower legs, so stretching here and the arch as suggested may have better impact than working on the toes which are the result rather than the cause.
affected is offline  
Thanks from
Jrzygrl (01-18-2018)
Old 01-19-2018, 03:49 PM #10 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,896
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,896
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Severe pain

I can still walk pretty fast in my running shoes. I can still raise up on my toes, walk on them and even walk on my heels. I can see the atrophy in both calves and I work on them as best I can.

After my sprained "good" ankle I couldn't walk at all for a few months and I think that made the atrophy progress in my calves.

The reason I like my running sneakers is because they are so well padded. I have a very high arch and naturally bony feet, even before ALS. My feet hurt less when I have the sneakers on so I pretty much wear them all the time. I have blisters on the top of my curled toes from staying in the sneakers all day. Not bad ones, just the beginning. They are bruised.

I did find stretching in the hot tub helped more than trying to do it myself on the bed.

Thanks for the suggestion. I'll keep working on the calves.
KimT is offline  
Old 01-25-2018, 05:11 AM #11 (permalink)
Member
 
Join Date: 2016
City: Hillsboro
State: OR
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 269
KW1234 has a spectacular aura aboutKW1234 has a spectacular aura aboutKW1234 has a spectacular aura about
KW1234 KW1234 is offline
Member
Join Date: 2016
City: Hillsboro
State: OR
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 269
KW1234 has a spectacular aura aboutKW1234 has a spectacular aura aboutKW1234 has a spectacular aura about
Default Re: Severe pain

I found f oot splints on Amazon that hold your toes upright and keep your toes from curling. I also hhad hand s plints made to kee ppl my fingers straight. I have pain in my shoulderthat I think comes from my tricep weakening more rapidly than the bicep. I use a concentrated CBD topic and Morphine at night.
KW1234 is offline  
Old 02-07-2018, 09:59 AM #12 (permalink)
Kristina1's Avatar
Member
 
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 450
Kristina1 is a jewel in the roughKristina1 is a jewel in the roughKristina1 is a jewel in the roughKristina1 is a jewel in the rough
Kristina1 Kristina1 is offline
Member
Kristina1's Avatar
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 450
Kristina1 is a jewel in the roughKristina1 is a jewel in the roughKristina1 is a jewel in the roughKristina1 is a jewel in the rough
Default Re: Severe pain

Hi Goldie, I get a lot of pain from these types of 'charlie horse' type cramps. I get them in thumbs, forearms, upper arms, upper legs, abs, tongue, and even facial muscles! I take gabapentin which seems to help a little. I have a splint for my finger curling that I wear at night.

I wouldn't recommend oxycodone for this-- the cramping is acute pain that dissipates when the cramp releases. Oxy won't really help with that. Neither will ibuprofen or any other painkiller unfortunately.
Kristina1 is offline  
Closed Thread

Tags
ball, fingers, ice, pain, shoulder


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Stabbing, highly localized, severe pain IhavePLS General Discussion About PLS 20 11-17-2014 10:58 AM
Having severe back pain Allen Harper General Discussion About ALS/MND 2 01-20-2014 06:09 AM
severe pain crow330 General Discussion About ALS/MND 4 08-25-2013 04:34 PM
severe head pain lillymilly General Discussion About ALS/MND 7 02-14-2010 09:40 AM
Severe Pain LUIGI575 General Discussion About ALS/MND 4 02-10-2006 08:09 PM


All times are GMT -5. The time now is 02:05 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016