Spasticity questions

[cricket52]

This has probably come up before, but I can't remember...

Does your pain get worse when:

a) you are tired?
b) you do too much - like more housework or shopping or walking?
c) for no reason?
d) post-viral?
e) all of the above?

I was thinking about increasing my Baclofen by another 5 mg/day when I woke up pain free, full of energy and **** on wheels. Course, I figured I was cured and tried to be the person I once was. Because I don't have a dx I often feel 'guilty' for not doing 1/10th of what I used to be able to do.

Finding a balance between rest and activity is difficult. Anyone else think they are superperson or the at least person they used to be when they have a few good days?

Do you play with the dosage - ie. up 5 mg for bad days, down 5 for good days?

Thanks for the help.

[frame]

yeah i play with all my meds (especially the fun ones :0 )
spasticity is definately a *******. it seems like no matter what dosage i take, it doesnt go away. thankfully i wasnt a very active person before the wheelchair/baclofen stage, so i dont miss doing things much :)
you know... i cant seem to stay on topic anymore. i just sort of post things these days that dont make a lot of sense. feel free to ignore it.

[lady_express_44]

My spasticity seems to feel the worst when it is cold, hence I call Winter: "spasticity season".

My legs do get sore and tired from walking, etc., and I guess if I really thought about it, it is likely as a result of the spasticity.

Daily stretching exercises have been very helpful, and LDN made a huge difference for me (pain-wise, but not with necessarily loosening things up though).

Other then that, I don't find anything in particular that makes it "feel" worse or better. Like Frame said, it's pretty much a constant.

Cherie

[UNDX Craig]

:) Hi Cricket,

I know exactly what you mean. For five and a half years they told me I was SPMS. Then in April of this year rescinded my diagnosis saying that I did not fit the profile of someone who has had MS symptoms and disability for the las 20 years according to what my MRIs were showing.

Now I'm undx'd and in Limboland. Since I spend 95% of my time in the home I get this false sense of security that maybe I'm not really sick even though they, the neuros, are looking into other brain and spinal diseases. Sometimes I feel really good and can get around in the home without using my cane.

Then it happens. I go out to run a short errand to the grocery store or Video store and WHAM! It hits me that I really do have something wrong with me and I am sick. I come home very sore from spasicity and overwhelming fatigue. Sometimes I have to lay down and take a nap and sometimes I don't recover until half way through the next day.

It is NOT all in our heads and yes I do change my dosage of Neurontin, Klonopin, and Baclofen just to get by. I just wish they would find out what the cause is so I can get on with my life. BTW, I've been on SSDI since December 1st 2003.

You're NOT alone in this.

[Spuggy]

Hi I take 80mgs of Baclofen and can add diazepam when needed.I was also having acupuncture from GP this left me weak though and my diagnosis has gone awol.

My Spasticity increases with:

Humidity
cold
Fatigue
Infections especially urine infections.
Tight clothes,especially bras and shoes.

I use crutches and always a wheelchair outdooors and have a brace for right leg.I now don't have a diagnosis but spasticity is a disorder in itself so don't feel there's nothing wrong with you.

[avalonai2]

Bullseye, thanks cricket this post was right on time. Also craig, thanks for the post just when I was thinking it was juist in my head, again, BAM! it's not a dream afterall.

BTW, mine is all of the above and always on.

[cricket52]

Craig:

I think of you often as one of the first people I know who had a dx recinded.

Now - if they could just recinde your symptoms as easily life would be grand. You have really been through the wringer.

It is NOT all in our heads and yes I do change my dosage of Neurontin, Klonopin, and Baclofen just to get by. I just wish they would find out what the cause is so I can get on with my life. BTW, I've been on SSDI since December 1st 2003.

Thanks for the advice. I have been on disability since 98 and am a bit closer to a dx, if possible MS is a dx. Baclofen and Clonazepam allow me to keep my feet under me. I guess I have to learn to manage them better.

avalonai2: Not a great wake-up call huh. Good days can be so deceptive. What makes me mad is when I look in the mirror and wonder who that old tired person is. I have so much I want to do and can't. It feels like I am obsessing all the time about this problem. The pain makes me irritable, sometimes I can't stand my own company. My best efforts are only a shadow of who I once was.

Spuggy: Is it just me or are more and more people losing their diagnoses? What is going on - clearly you are suffering, so are Craig and Matt and Teddy and avalonai and many of us.

I just don't get it. 80 mg of Baclofen? Good grief, are they going to put on on a Baclofen pump next? Your pain must be horrible. :(

Don't you find it unnerving that doctors call treating you their "practice" ?

Frame: Posts, writing, socializing, getting groceries used to be so simple. My twin told me yesterday to get a psychiatrist - I don't seem to be able to stay on topic these days either. I know I have cognitive problems, I do my best. For some reason though, coming from her that really hurt.

i just sort of post things these days that dont make a lot of sense. feel free to ignore it.

Can't ignore you - you have too much to offer. :)

[pals1107]

Craig, it's a meen world out there, and not fair. I hear where you are coming from. At times (not for long) I feel sort of normal and start to wonder,,,,,,,,bamb, I know the feeling. Lots of bams in the last few weeks, darn legs aren't cooperating. Ah but I guess that's a good thing since I am off to the Cleveland clinic in 9 hours. After this drive I am going to be whipped for my 10:30 am neuro appointment.
Pat

[Teddy]

Hi Cricket, in relation to diagnoses being rescinded, I wonder whether it may have something to do with the publication of the revised McDonald criteria were published (November last year)? Just a thought.

Because I don't have a dx I often feel 'guilty' for not doing 1/10th of what I used to be able to do.

That comment really hit the nail on the head (or something like that!). I discussed my feelings of guilt with my rehab OT just yesterday, who is desperately trying to persuade me to use a bath transfer board. Although intellectually I know I need one for safety reasons, because I'm very unsteady standing in our shower/bath and this scares me, some part of my brain feels that this is unwarranted because I no longer have a diagnosis. I think similarly about using my wheelchair, even though without it I pretty much wouldn't be able to leave the house.

It's only when I do stupid things like not use my rollator around the house (because I'm FINE, you see, there's nothing wrong with me!!! :rolleyes: ) and then trip over the grout between the floor tiles, or bits of pet hair lying on the floor, or my legs go into charley-horse cramps because my poor little toes are hanging on for grim death to keep my balance in the shower, that I recognise the validity of my OT and physio constantly telling me that I'm a danger to myself if I don't use these things...

[Whisper]

I still think like a healthy person...planning on doing stuff like I once was able. I get partway through (usually only one item done on my list) when I realize that I am NOT that person anymore.

Now if I can just learn to tell my brain that my body doesn't like it when it makes plans for it!

Lorraine:)

[*Joy*]

I suffer from spasticity but I'm not sure what I want to say about it.

First, my heart goes out to those of you who haven't been diagnosed and suffer and to those who have had their diagnosis rescinded. I can't imagine how horrible it must be for you.

Spasticity.

Baclofen makes me nauseous so I take Zanaflex. I do adjust my dosage. Some days I take it twice a day, other days once a day because it makes me goofy.

Viruses, cold, flu.. definitely ramp up my spasticity. Stress, overdoing it and heat does too. I'm like the rest of you though, I try to trudge on. I never know what will be 'too much' because it changes every day.

Spasticity affects my sleep. Some nights I lay there feeling like a twisted pretzel, spasms and tightness keeping me awake (even after an Ambien and a Flexeril)

I have good days, of course but they seem to come less and less frequently.

[cricket52]

Thanks for all the answers. :) I posted those questions on a day when my self-esteem and self-worth had taken a beating.

Whisper said it well - I think like a normal person. I guess we all do.

It's nice not to feel so alone, and I will play with my dosages a bit.

When you earnestly believe you can compensate for a lack of skill by doubling your efforts, there's no end to what you can't do. :D

[Whisper]

Thanks for all the answers. :)
It's nice not to feel so alone, and I will play with my dosages a bit.


Hi again,
I do feel for you. It's not nice when you can't get relief from what ails you. I KNOW.

When I saw my doctor on Friday last week, I was told "no more meds for me". He says I'm too sensitive to most meds now and that it only seems to cause me more discomfort to be taking them.

So as far as spasticity goes...I use some light massage to work out the 'knot' in my muscles and pray...(Neither has seemed to work overly well thus far!!! :D )

I wish you all the best.

Keep your chin up Cricket...you had some relief before...it may just be a case of fiddling with the meds to get the right dosage! I wish you all the best.

Lorraine

[dizzyintx]

My neuro is great. She allows me to up the dosage of both zanaflex and baclofen daily depending on how I feel. With baclofen I take 60mg to 120mg per day. I wonder if adding zanaflex to your arsenal would help. My DH also stretches me daily. he was taught by a PT so he's pretty good. It still isn't enough, at night I'm a spastic mess.

I am fixing to try the baclofen pump so I hope that goes well. I wish you luck finding the right combo and staying awake to enjoy it,:p

[0357]

Over time I've had to increase my baclofen. IMO 5mg is not a big increase. Most neurologists let you tell them when you need to have an increase; or they should.

[Willowtree]

Hi. I take zanaflex 3x a day. I wish I could say that it helps. For me, it's better than baclafan, though. I also take klonopine

[ewizabeth]

Hi there,

I don't adjust my dosage, but I have been tempted, I suppose it wouldn't hurt to up it slightly once in awhile.

I would answer A, B, and C. I don't generally get viruses often enough to know if I should say all of the above.

I started Baclofen nearly two months ago, 10mg 2x a day. It takes the edge off the pain, so it's bearable at least. Sometimes I have to add ibuprofen to the mix. I also take two AD's that are supposed to help a bit with pain but I don't know if they have that effect or not.

I see the neuro week after next and I'm wondering if he'll add something else on top of the Baclofen, or increase the dose? The pain is keeping me from exercising, because of the resulting increased discomfort.

Good luck in finding a helpful remedy! I know it's tough to deal with.