Pain

[KimT]

How many of you deal with constant pain? Muscle spasms, sciatica, and shooting pain in my trunk area are all getting much worse. The strange thing is that I can still walk, bend, and have good range of motion. Laughing or crying makes the pain in my back and ribs hurt more and it becomes shooting.

It all started after I got a massage for the spasms in my glutes and the left side leg issue. the MT said I was very tight all over and worked pretty hard on my back. This was a month ago. I got a massage three weeks in a row. Up until a few days ago I was walking 1/4 to 1/2 mile every morning. Now the pain won't let me. The pain moves around and is mostly sharp. Not like the cramps in my feet.

My pain doctor (neuro) prescribed Oxy. I didn't take it because I still don't have my BiPAP. Insurance and the doctor screwed up.

 

[affected]

Sadly pain and ALS often do go hand in hand.

But usually it is more to do with joints freezing, or immobile limbs pulling on joints, or neck pain because you can't hold your head up.

Cramps and spasms can also occur which are a bit different to spasticity. If you have spasticity then your muscles will feel tight.

I do worry the MT has bruised you up and it can take many weeks for this to settle at the best of times.

How is your core? I'm wondering if an OT might help you look at positioning when sitting and even in bed that may help a little?

If you have been prescribed low doses of Oxynorm, I would say take it! Low doses won't knock you out, but very regular low doses will keep pain levels at bay without causing drowsiness and certainly without depressing breathing.

I couldn't believe the difference in Chris with his pain when they got him on a tiny 1mg of oxynorm every 4 hours. Even his face changed as it had been drawn because of pain. He had increased ROM, and even better balance with the pain under control.

Sadly, with FTD, as soon as he came home from his few days having this pain regime worked out he refused to continue taking it and went back to pain.

 

[scaredwifetx]

The description you gave of this type of pain sounds like a lower disk problem. I have had some major issues with my back over the years and the pain radiates down the leg. I would check out if your back is being properly supported. Mine acts up when I am sitting for to long. I may be barking up the wrong tree but maybe you could ask your doctor. If your lower back is hurting and it radiates down the butt and legs it very possible is in your back.

 

[ShiftKicker]

I had sciatica about 10 months ago. It started after a massage therapy and subsequent physio appointment when my muscles were too relaxed to keep everything in place. If your muscles are not as strong, or you have spasticity (or both!) it can pull things out of whack and cause pinching. I was lucky I had a great physio that could help me work through it gently and realign my hips to stop the absolutely excruciating pain of sciatica. My concern is that your massage therapist has thrown something in your spine out of place due to an overenthusiastic treatment.

I hope your massage therapist can GENTLY help realign you again. Hard massage is not good when your muscles can not recover quickly. I hope your pain is fleeting and some relief comes your way soon.

 

[scaredwifetx]

I am going to try and post again and hope this one shows up. To me it sounds like a lower back issue. I have suffered with back issues over the years and when my acts up a lot I feel pain down through my butt and into my legs. I normally have the issue when I have had to sit a lot where I am not getting good back support. Try getting some type of lumbar support and put ice on for 15 mins and off for 15 minutes. if you can take something for the pain it will help you relax and assist the back in healing. Also you noted after a message. I had the worst back pain ever after a massage and think it was due to laying on the table. If you can take Aleve or some kind of inflammatory meds it will help. I take three in the morning and it really helps. I also soak in a hot bath filled with Epson salts.

 

[Buckhorn]

Hi Kim. This is a tough one. It sounds like perhaps a "deep tissue massage" was performed on you, and I am assuming you did have something akin to bruising in the muscles because of the fragility put upon the muscles by ALS and the constant strain. Less and less muscle fibers are being recruited to do the job that was once done by many more. The ones that are left were over-worked by the MT and now healing is slow and hindered by ALS. Plus, add to this the underlying problem that lead you to seek help in the first place. Whenever possible, sit in a straight back chair with your feet flat on the floor and maintain the normal lumbar curve with a small pillow if possible. Change position frequently and remember sitting puts more strain on your back than any other position. Once every hour, get up and just walk to the kitchen and back or one end of your house and back; if this is easy do it twice. Do not spend lots of time sitting in cushy chairs (which cause you to slouch and puts more strain on your spinal ligaments and paraspinal muscles. At your next ALS clinic appointment, ask the PT to show you gently lumbosacral / pelvic range of motion exercises. Light heat 15-20 min at a time may help. Sidelying position in bed with your knees pulled up towards your belly to about a 90 degree position with a pillow between your knees is a position that has been demonstrated to unload the disc and strain on the back. Try to limit forward flexion as much as possible. A light dosage of oxy should help you as well, although you will have to be the best judge of how to take this, relying on your own experience in whether you feel you need to cut the tablet in half, etc.

My husband's first symptom was back pain that we thought was from a strain. It never went away and has gotten worse and worse. I do light massage on his back and use his IF/TENS combo e-stim machine. I have given him all the advice that I have given to you. He is so frustrated at not being able to do much anymore ...... you know the drill. I hope you get some relief from this soon. If not, get checked out by a PT (or chiro if you prefer) for pelvic asymmetry. Just make sure they use very gentle techniques to realign you if you do have a pelvic slip (very common in women, esp. those who have had children). Wishing you some relief!

 

[gooseberry]

My pals had intercostal and abdominal spasms. You could see them if he lifted his shirt up. Other pals here have noted the same. I believe it is als and nothing relieved steves pain. Having spasticity in your core really sucks..

 

[lgelb]

Unless you sleep hot, Kim, are you using a low voltage heating pad at night to help relax the muscles? Have you tried something like cyclobenzaprine ER? Hot tub? Is there anyone doing warm water aquatherapy where you are? I know there's a bodywork practitioner out there who could help you, but I understand you might not be rushing that direction.

Rest/nutrition is the other piece, of course! I would consider revving up your protein.

Best,
Laurie

 

[tripete]

Pain is something I live with everyday - all the time. The doctors will tell you that ALS does not cause pain but that the pain is caused by fatigue, cramps, spaciisity, blah blah blah - it is all the disease. Unfortunately I have not found an answer, but then again I am not willing to take their meds.

You do need to be careful with massages. As noted earlier deep tissue massage destroys muscle while removing knots. Our muscles are already being self destroyed and do not regenerate. So the way I look at it is to carefully choose how I want to destroy my muscles by what I do - deep tissue massage is not one of those ways.

Tillie has created some good stretching videos. Also lite long stroke rubbing of the muscles with coconut oil can help for temporary relief.

The bottom line though is that we are dying and this is part of the journey. For me the pain means that that part of my body still works and I try and be happy with that knowledge.

 

[KimT]

Unless you sleep hot, Kim, are you using a low voltage heating pad at night to help relax the muscles? Have you tried something like cyclobenzaprine ER? Hot tub? Is there anyone doing warm water aquatherapy where you are? I know there's a bodywork practitioner out there who could help you, but I understand you might not be rushing that direction.

Rest/nutrition is the other piece, of course! I would consider revving up your protein.

Best,
Laurie

I've been using two heating pads for about a month. I sit on one for my glutes spasms and use the other one wherever it hurts the most. It helped a lot at first.

When I got the massage I could feel my front ribs "give" as he worked on my back. After the massage (2nd one) I had non stop fasciculations in my lower back.....a place I never had them before. They left and the cramps took over. Now they are so random (pain stabs) but it hurts to take a deep breath.

I told me ALS doctor all this yesterday. He still thinks I have more than ALS going on because of my family history of autoimmune,my having Hashimoto's. I just want the pain to stop.

 

[Ells]

I know & understand your reluctance to take painkillers, but by tensing your body and perhaps using different muscles to compensate for not using the sore ones, you may be doing more harm (if that makes sense?)
Also, short term use of Diazepam may be good for localised spasm.

 

[Texas Quilter]

I remarked to the neuro at my ALS clinic about a year ago how surprised I was at the amount of pain I was having. His reply was that ALS doesn't cause pain -- yeah, right. I have a lot of sore & aching muscles, a lot of itching, and burning nerve pain in my thighs & sometimes in my ankles. For my arms I often use a product called Two Old Goats. Don't know why it helps, but it often does (unless the pain is severe). Gentle stretching & heating pads. Some days are ok - some nights are bad.
I guess this isn't a very encouraging post !! Commiserating I guess.
Dianne

 

[lgelb]

As usual I typed too fast -- I meant low voltage mattress pad, e.g. warming up the bed before you get into it, then turning the heat off if you like.

I suggested a muscle relaxant rather than an analgesic because I think you are on drugs for pain already. Weren't you getting a recliner w/ heat/massage or did I make that up? And I'd still consider the hot tub, positioning the parts in pain in front of the jets, just a little mild counterstimulation.

 

[Buckhorn]

"The doctors will tell you that ALS does not cause pain but that the pain is caused by fatigue, cramps, spaciisity, blah blah blah - it is all the disease" (Tripete). Amen! I am continually amazed at how quickly scholarly articles and neuros are to tell you what is NOT part of ALS (pain), and also what does NOT cause ALS. Hmmmmmm - how do they know what doesn't causes it, if they also in the same breath don't know what does?! How can a PALS be told they have "normal sensation" and the sensory nerves are unaffected, and at the same time say that pain is not one of the symptoms? My husband's very first symptom was most likely pain....... I know that the docs will say that ALS does not directly cause the pain (it is the breakdown of the muscles, spasticity, lost ROM, etc.) but as Pete says - It's all the disease ..... Sorry to digress here. Commiserating as well ........

 

[ShiftKicker]

Buckhorn, I'll digress right there with you.
They use fancy words like primary, secondary and tertiary symptoms. While it is medically correct to say the process of ALS (the actual loss of motor neurons) does not cause pain, it is misleading to those who suffer from it. It causes a situation where the patient is told by the doctor that what they are feeling or experiencing is not real, not such a big deal, or unrelated. I wish they would not make that such an important part of the disease description in the medical literature. It creates situations like with Kim here- who is clearly suffering pain as a result of ALS, however 2nd or 3rd hand it may be, and creates doubt that maybe something else is wrong, in addition to having such a wretched disease.

Kim, I hope you have found some relief from the pain. Laurie's suggestion of warm water/hot tub is a really good idea.