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lizzy

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Joined
Jul 29, 2008
Messages
11
Country
CA
State
ontario
City
london
First of all, let me say how wonderful I think this site is, it gives me inspiration and information that is helping to get us through this horrible journey as I read all the wonderful member's posts and supportive comments. I am so appreciative of this.

Currently we are awaiting diagnosed of MND of some type (ALS suspected) for my husband. He has been "suggested" but not diagnosed with fibromyalgia but his sx are worsening and he's losing muscle mass and motor function every day. It's been 3 years now and we are hoping to get some answers but also hoping it's not ALS.

For the last 4 months he's been experiencing high levels of pain in his back (he says it feels like his kidneys hurt) and his back has huge knots in it that are raised like large humps along the sides of his spine. Some nights he's awake all night b/c of this pain, regardless of the many pain killers he's on. Aside from this, he has now starting experiencing the same level of pain in his hips, he cannot get comfort to tolerate it in any position. He is tripping more consistently although he uses a cane (not sure if this is related). He has experienced spasms/cramps consistently for quite some time as well.

Could these knots me related to muscle wasting? Is there anything I can do to help ease the pain? He uses heat packs, pain meds (Naproxen, Tramacet, Lyrica, sometimes slow release morphine), and tries to stretch each day to no avail. It's so hard to see him in so much pain and fading away and not be able to help.

I would appreciate any advice you can offer. Thank you again for being here, you are all an inspiration to many, including myself. Stay strong.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Lizzy, there are not many of us with ALS who suffer from pain of the type you describe. Most have pain associated with muscle spasms, or cramps. I have been to numerous Doctors trying to pin point what is causing the pain with no results. All they tell me is take more narcotics.
I have found some relief years ago when this started by going to an egg crate mattress cover, and then to a movable bed with a special mattress. This has helped a lot, but has not solved the pain issue totally.

I think my pain is associated with muscle loss that supports the joints such as the knees and hip joints. However the pain goes all the way down my leg from the hip to the toe when it is bad. It is not Sciatic pain as I have had this for 19 years. This is more like a bone pain. Almost like someone took a razor blade and cut to the bone down the leg. I do not know if this is similar to what your husband is experiencing?
I wish I had more answers for you. Maybe others can come up with some ideas.
 

lizzy

Member
Joined
Jul 29, 2008
Messages
11
Country
CA
State
ontario
City
london
MtPockets, thank you for your insights. They way you said that it is like a "bone pain" is exactly what my husband has said to me often. He also has this back pain and I believe its due to muscle spasms which might be causing the knots? He says his hips hurt in the bone and that it feels like they are going to pop out at any time, his muscles feel weak trying to "hold them in place" and since its gotten worse he walks with a limp and stumbles more often. Does this sound familiar?
I wish we had the ability to purchase him a special mattress but we are in a battle with our insurance plan to cover any disability and he's not been working for 3 years now. One day it will all fall into place but for now we get by the best we can and hope that we can learn from our experiences!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi lizzy. Walmart has an egg crate mattress pad for about $45 and Shoppers home Healthcare has a thicker one for about $60. The ALS Society has a loan closet with various mattress pads. I used a Spenko pad from them and now have an air cell mattress and hospital bed from them. Have you registered with ALS Ont.?

AL.
 

scbridges

New member
Joined
Sep 27, 2008
Messages
3
Reason
CALS
Diagnosis
07/2001
Country
US
State
Arizona
City
Scottsdale
Muscle Pain

Hi.. Is your husband getting range of motion exercises twice a day. That helps. Massage? that helps. Must keep moving. Proper support in bed... low loss air mattress for under him. Good pillows... make me heal ... website has lots of pillows, wedges, etc. really is a website for plastic surgery, but I have bought pillows for years for him. Lot of sizes and shapes to support his limbs. My brother has had ALS for 10 years.
scbridges, sister and caregiver
 
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