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I have no formal 'tag' for my condition yet beyond being told that I have UMN death caused by either PLS or HSP.

For the last 6 months or so I have started to suffer from intense pain in my limbs - a 'shin splints' feeling in the lower part of my shin and ankle, and a pain in my upper and lower leg muscles that I can only describe as if someone is drilling into my muscles along the length of them. I have not been offered any medication for this and at the moment I am managing by taking a mixture of codeine and ibuprofen 3 times per day. I'm not sure if my GP and neuro aren't offering me any stronger pain relief simply because I'm not describing my pain very well, and I'm really conscious that I shouldn't be taking this much codeine due to the side effects.

How does everyone manage their pain - and how do you describe it to others?

I understand what you mean about describing pain. It's just hard to put in words! It's not like a toothache. There are times that I can't sit in my wheelchair because the muscle spasms are in the back of my thighs and it hurts to be touched or compressed.

I wish I could help you; but like you, I have a hard time describing it. Surely somebody out there can give us a few brilliant words so we can use them!

Allen and Becky (Tokafang) this one is for you.

I hear ya...esp. today with the pain. I already have arthritis on top of it and the drastic plummit in weather here from 100's last couple days to 60's has my body going "OWWWWW!" :)

I don't even have codeine to help, but since I am maxed out on my aspirin for the day this is what I have been doing to help the pain:
1. Heat pad/message pad. Kill two birds with one stone...heat helps pain...the messager gently works out some of the extremely spastic muscles in my back and legs.

2. I have this thing that is for workouts is cylinder shape, foam, but still kind of hard. I use it to 'work-out' the muscles in my legs. Basically you just lie down on top of it and slowly move it down from top of legs to the bottom. Let your body weight and gravity do the work for you. All you have to do is move inch by inch down and its rolls under you. Special note on this is painful if you have knots...but this is the point. It rolls them out like a rolling pin. Feels a LOT better after you are done when muscles relax and are not in tension.

3. Ice can numb the pain for a while. Or a hot shower or bath to soak in works well too.

4. Stretching the area...again painful in the beginning but can help tremendously by just a couple minutes in.

5. Finally acupressure. I find this extremely helpful. Just look on the internet for the part of your body that hurts. Ex. Shin cramps acupressure points to help . This way you find the exact spot and after a few seconds to minutes of pushing on that area you would be surprised how much it relieves your pain.

Hope it helps for the non-conventional ways. :)
becksie...i got a theory....hark at me,mr know,,all.........i reckon the increased tone in our muscles which is continuous is the cause of the pain. slowly pulling on joint tendons and causing contractions pulling the skeleton body out of shape........not pain but a gnawing toothache multiplied..except when you walk when it beomes a screaming....toothache..........have you noticed how the gnawing seems onthe surface at the outside of your neck and shoulders along the lower back.the outer legs and ankles...or am i just imagining it all....johnnynonothin......
Sure sounds like spastic pain for sure.. Really hard to understand for sure.. Maybe Zanaflex, or some prescription pain patches.
The hospice nurse called it de nervation. The nerves dying ,or spasticity. The way I described it is similar to growing pains. A very disruptive ache in the muscles. The funny thing is I was told at diagnosis was ALS wasn't painful. I sure am glad it doesn't hurt cause it would be real bad if it did. Lol
I'm sorry to hear of the pain many of you are dealing with. I'm curious to know where in your progression of PLS did you begin to experience the pain? I've been fortunate so far to not feel much pain. Sometimes my upper left leg (my "bad" leg) aches, but it is bearable. Also, do any of you have areas of your legs, arms, etc., where you have a numb spot? I have an area about the size of a golf ball above my knee on my left leg that has been numb for almost a year. Before it became numb, it ached a bit, then itched! Strange things happen...

I had more pain before my diagnosis, at the time I thought it was "charlie horses" style of cramps... but in retrospect, it was probably the denervation of the muscle, which basically is the muscle starting to die off... My arms are much more painful now, either because this disease has been progressing, or because I'm using my arms to pull me up the stairs and using the cane.

I've been using magnets for my sciatica and ankle pain for nearly 17 years now, and they have a magnet roller that if you have someone roll it quickly - not hard, but fast - over your painful area, it will help numb the area. I use a brand called Nikken, but there are other good quality brands as well, so check into them, talk to their reps (I don't sell these, just an avid believer in their use!). I still use them everyday: magnet mattress, magnet seat cushion which I'm currently sitting on due to my arthritis in my back, inserts for my shoes, the mag rollers, and a magnet back pad. It's not a cure, but is very helpful, and you can ask me for my stories about these if you're interested. Suffice it to say that I wouldn't be telling people all over this site to try them if they didn't help me immensely. Please, look into these and give them a try... just make sure you drink plenty of water, and give it about 2 weeks before you make up your mind if it works for you.

This particular company operates like Avon, they have reps... they can come out to your house and demonstrate and explain the theories of how this stuff works, which I won't get into here. And many reps have a loaner policy, where they can loan you an item before you buy it to see if it's actually going to help you. Or you can just go online, figure out what you want to try, and buy it on an auction site. I can't recommend these enough, PLEASE give it a try!
yup been there for years. I have had several things that help. I use baclofen to help decrease the amount of spasicity during the night especially. I rarely take the narcotics, as they only take the edge off for a little while and then you start to need more and more. I take ibuprophen as a first line of defence for inflamation but to take it everyday, it too will loose its effectiveness and the inflamation will come back with a vengence if you miss a dose. So actual pain meds are only researved for break through pain that I cannot tollerate. The muscle relaxers work better. As well as muscle massages, hot soaks in a tub or shower. Rubbing out knots hurt like heck sometimes. Especially the ones in my legs and hips. I usually cannot tollerate them to be touched until I have taken a baclofen and tizanidine (my night time cocktail). My hubby rubs them almost nightly and it seems to help me tollerate the pain in the morning better.

I have learned that this is just part of the disease process and to be pain free is just not something that is attainable for me. So staying as active as I can and using my power chair when I cannot walk anymore helps. I now have body wide muscle pains because I my disease has progressed that far and I am getting weaker. Its been about 20 years now.
exactly the same as joyce/akmom..............baclofen for the worst part but really its just a case of having to put up with some of the pain.
was on amitriptyline for many years,though an antidepressant its used as a pain killer for chronic pain.............but had to come of it as it was causing major problems with my hypotention.
i found hot baths with lavender or rosemary oil worked wonders but i now have a wetroom so no bath.
Well I am on baclofen 20 mg 4X a day, zanaflex 2mg 2X a day. Flexeril 10 mg 3X a day and soma 350 mg 3X a day and would have to check the other 2 and still no relief. My feet have turned in and the doc said contractures plus I have permanent babinski reflex, my 3 middle toes are frozen down while outer 2 toes point up. Started 2 years ago this month. Happy Frickin Anniversary to me!

I hope you don't experience the pain that I and others have to endure. I wouldn't wish this on my worst enemy if I had one!

Good Luck to You and sorry you have to be here,

Darn, I wrote a post about how I treat my pain with magnets and it got sent to moderation several hours ago... if anyone is interested, I can pm you the info, but hopefully it will get posted soon, as I don't sell them, but an avid user.
Hello everyone,

My Name is Sean Damon and I am a 41 year old male -(Husband and Father of 2 boys) who was forced to retire as a Federal Law Enforcement Officer with the US Dept of Justice in Feb 2011.

I finally received a Diagnosis of PLS YESTERDAY 10-6-11 after almost 4 years of numerous tests and evaluations.

Muscle pain for me has been brutal for about 2.5 years and is at it's worst right now and has been for the last month or 2. My worst pain is the paraspinal muscles in the thoracic area and around to my chest muscles- and the back of my neck where it attaches to the back of the head. Oh, and between my ribs. Of course, the first pain site was my left leg Calf, then Hamstring and quad. I just started zanaflex today, but the Neuro is sending me to a Pain Clinic in 2 weeks to properly treat the pain. I was recently switched from Baclofen to Zanaflex because I couldn't tolerate the side effects of Baclofen.

I've been using a cane for the last 12 months because the weakness and balance has gotten so bad. From what I am told, this is a VERY rare disease and I am glad to find this PLS support group Forum and chatting with others like me to help support each other and understand. Like others, I will have repeated EMG's over the next few years to make sure this does not convert to ALS.

I am imagine this disease would automatically qualify us for Social Security Benefits for those with PLS in the US.. Right? The Neuros said they were going to start filling out my SSI Paperwork ASAP. I look forward to meeting all of you with PLS - I am a good ear and willing to help out anyone in need.

Best Wishes Everyone
Thanks everyone for your replies - I think I've realised that I might be tackling this in the wrong way as I'm relying on killing the pain rather than preventing it.

I've had symptoms for the last 3-4 years, starting with balance issues. I've got all the usual UMN signs but the pain in my legs began about 6 months ago (to a level where I have to take painkillers) and has been in my arms for the last couple of months. I have been following a programme from my physio and, while this is keeping me mobile, its not stopping the cramps in my feet and the pains in my bones. Growing pains is the ideal way to describe it I think!
Hello Sean, welcome to our group. I'm sure you will continue to find this a wealth of information and comfort just knowing that there are others who understand. I will be thinking and praying for you. I am pretty new to this forum as well. Diagnosed in June 2011. I look forward to your friendship. LouLou
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