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Pain... what to do.

Jamesgol

Active member
Joined
Dec 21, 2018
Messages
37
Reason
PALS
Diagnosis
12/2018
Country
US
State
OK
Lately, I have been experiencing a lot of pain in my upper left arm and left hip. There is a constant throbbing and, sometimes, a very sharp stabbing pain, especially if I move the limb. My wife works on ROM once a day with me. That is always painful.

What do PALS here do about pain?
James
 

Nikki J

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Mar 22, 2012
Messages
7,391
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Check your positioning to be sure your joints are well supported. Review your transfers, seating and bed. Consider heat or ice.

A lot of people seem to find relief in medical marijuana. It appears to be legal there. Are there dispensaries yet?
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,174
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
James, do you have arthritis? What you describe sounds like a possibility- it's how I'd describe what I experience with arthritis in various places. Immobility and/or spasticity can really exacerbate even mild arthritis.

To add to what Nikki recommends, if you can get a physio to assess, that might be a good idea. There are supplements you can take to reduce inflammation/joint pain, as well as focused stretches/exercises that might help.
 

KarenNWendyn

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Jul 29, 2017
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2,012
Reason
PALS
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07/2017
Country
US
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Oregon
Here’s my approach, much of what Shiftkicker and Nikki have said already. Consider some or all of these modalities:

1. ROM and stretching maybe 2-3x daily. Best if done after a hot bath/ shower or using a heating pad to warm up stiff muscles. Start slow and easy with any ROM and stretches.

2. PT to help with above

3. Consider X-ray of any painful or swollen joint regions.

4. NSAIDs like Ibuprofen judiciously, taken with food. Watch for stomach upset, fluid retention, dark or tarry stools. Stop if any concerns.

5. Consider Baclofen or Tizanidine if there is spasticity.

6. Gabapentin or Cymbalta or Lyrica sometimes are useful for chronic non inflammatory pain.

7. CBD oil with or without THC.

8. Massage

9. Acupuncture

10. If it’s one or two areas such as hips or shoulders, consider a Lidocaine patch 12 hours a day (to include sleeping hours). Other pain patches such as Capsaicin, NSAIDS also may help.

11. Opioids are a last result unless in or nearing terminal stage of ALS.
 

KimT

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Extremely helpful member
Joined
Nov 18, 2014
Messages
3,247
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Topical THC cream helps me. I have a torn rotator cuff and swimming made it worse.

Don't just assume it's from ALS. Karen has some good suggestions. If you can't tolerate non-steroid anti-inflammatory meds, you can try adding curcumin to your meds. Take after meals.

I've had excruciating pain off and on since January 2016. Hot showers, gentle floating in heated pool, heating pad, and medical cannabis keep it under control. Every now and then I have to take 1/4 of an Oxy a couple of days to break the pain cycle. I also take one or two tylenol each day.

The topical THC worked better than prescription cream with five different drugs. I use it liberally and have never felt high or weird from it. I also take 100 mg of CBD at night along with 10 mg of THC, both sub-lingually.

PT helped me and I'm set to go back next month. Massage helps as long as your MT understands your condition. I've not tried acupuncture but it did help with migraine years ago so it's probably worth another look.

Pain can make a good day horrible. Try different things until you find something that gives you a better quality of life.
 

Nuts

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Lost a loved one
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01/2014
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North Carolina
You've already received some great recommendations.

Also consider seeing a pain management doc. My husband received several rounds of steroid injections over a couple of years with ALS. Later we settled with topicals, heat, ROM, and finally a variety of oral pain meds (and by oral I mean by mouth and feeding tube.

It's going to take some experimentation to find what works best for you--but don't just call it ALS and suffer. Yes, the ALS exacerbates other problems, but sometimes you can address those issues just like any other patient in the world.

I hope you find relief.

Becky
 

lgelb

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Joint support is #1 for keeping it from worsening. ROM should not be painful. Make sure she is supporting the joint as she does ROM, maybe have a PT watch? So if you are opening and closing the arm, the elbow is being supported along with the shoulder, as an example.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,066
Reason
DX MND
Diagnosis
07/2014
Country
US
State
Colorado
You have received good advice. Here is my experience, just to pile on.

I started having the kind of pain you describe in my upper arms. My first step was to get a diagnosis of what was wrong so that we could properly address the issue.

I saw an orthopedic shoulder specialist who diagnosed biceps tendonitis in both arms.

He prescribed a Non Steroidal Anti Inflammatory Drug (NSAID) cream and physical therapy for passive Range Of Motion (ROM). I saw a physical therapist who specializes in shoulders until my Medicare benefits were exhausted.

My wife is a physical therapist, but not a shoulder specialist. The shoulder specialist instructed her on what to do with my shoulder. My wife took over doing the ROM work.

A few months later, I started having similar pain in my hips. I saw an orthopedic hip specialist at the same practice. I got the same story. Physical Therapy was ordered for my hips.

My wife now does ROM for both my shoulders and my hips. It makes a huge difference.

Both orthopedic specialists said the tendonitis is caused by atrophy.

Your diagnosis may be different. I encourage you to see a specialist for a diagnosis so that you are sure the treatment you receive is appropriate for the diagnosis.

I would be really surprised if your diagnosis does not lead to a treatment of carefully-performed passive ROM. In my experience it is critical that the passive ROM be performed carefully. For me, it is easy for the passive ROM to lead to increased pain if it is not done just right.

One other note is that the doctors ruled out giving me a steroid injection because that has a very slight risk of causing the tendon to rupture, which would require surgery to repair. I am not a candidate for surgery for many reasons, not the least of which is my poor breathing.

Steve
 

MarieLaure

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10/2015
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FR
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Ile de France
Glad you asked and got such useful advice and experience feedback. Not much to ad. What helped my dad most was reposition rom and cbd oil massages.
Let us know when you feel better !
 

Jamesgol

Active member
Joined
Dec 21, 2018
Messages
37
Reason
PALS
Diagnosis
12/2018
Country
US
State
OK
Thanks to all who offered advice. I learned a lot from this discussion. I'll be trying some of the things mentioned.
 

lgelb

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I don't know what concentrations are involved, but in the US, Walgreens and CVS now sell CBD-infused "skin care" products (patches, oils, creams) in some states, and Kroger just announced they are following suit in 17 states.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
590
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
Everyone has already said everything. My first stop would be a doctor visit though to make sure of anything treatable. It's not always just als.
 

nona

Active member
Joined
Oct 1, 2018
Messages
51
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
My left hip pain was diagnosed as bursitis and the steroid injections have helped immensely. For my arm and shoulder pain, the best relief has come from my twice weekly PT visits through the local VNA and covered by Medicare.
 

KimT

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Extremely helpful member
Joined
Nov 18, 2014
Messages
3,247
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Just don't get sucked into the drugstore crap and health food store crap that claims CBD. First, THC cream is better for pain. Secondly, most of the stuff in the drugstore and health food stores are way too watered down to have any therapeutic value.

The injection in my knee, which had no structural damage, did nothing. The one in my shoulder, which showed a torn rotator cuff a tendonitis helped 50%. The THC cream helped a lot but it is short acting....sort of like taking a pain pill.
 
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