New here. Looking for opinions :)

[ToughMama]

What I wonder about based on your description is spasticity (muscle spasm, cramping, stiffness, pain). If this is the case a muscle relaxer would be a better type of medication. However, I am definitely not a Dr. and do not know the reasoning behind your Neurologist's offer to prescribe one of the 3 medications mentioned vs. a muscle relaxer. Hopefully one of those medications will help.

How does one know the difference between just a cramp and spasticity? I can tell you that it feels like a cramp that just wont go away, it's tight and toe curling and just plain painful.

I think he was tying to pick a few medicines that wont upset my insides, while treating many symptoms at once. So, not only for the hip and foot pains, but also for headaches and tremors as well as something to help me sleep well through the night.

[KoKo]

Hi ToughMama

Sounds like your doctor and neuro are paying attention, and trying to get answers for your symptoms.

Although having so many tests, and seeing different doctors, sure isn't easy, (to say the least), it's the only way to figure things out.

How does one know the difference between just a cramp and spasticity? I can tell you that it feels like a cramp that just wont go away, it's tight and toe curling and just plain painful.

Sorry to hear about the painful cramping - ouch!

Sometimes "normal"(?) cramps are caused by simple things such as low magnesium or low calcium, (not sure if you were tested for these), or even by not being hydrated enough.

Not sure how to tell the difference though, between spasticity vs muscle cramps. I have spasticity which usually involves the large muscles in my legs and arms, although I have had the foot cramping in the past (but not very often).

In any case, hope you get relief soon.

Glad to know the docs are working with you.

Hang in there ToughMama, and keep us posted.

[ToughMama]

(moderator - can this thread be moved under the "limbo landers" heading? I feel like it's in the wrong place)

Hello! I just wanted to come back and thank everyone who took the time to reply to my posts.

I feel like most of last year is a blur of awfulness, like my health really spiraled downward for about 8 months. I'm glad I documented (journaled) my symptoms - it feels like they happened to a different person, because now - now I feel okay (not great, but so much better).

I saw a rheumatologist (awful doctor), who basically scolded me for not being on a stronger medication for my ulcerative colitis (humira or remicade), told me I have arthritis related to the UC and put me on a round of prednisone and then she told me to go back to my gastroenterologist for different medication. She was just an awful unkind and rude doctor. Anyway, I feel like she blew me off.... but prednisone OF COURSE made me feel much better. Like I've broken through "the fog" and can now almost function like a normal person.

So, for whatever reason - the steroids, fixing my low vitamin D, or just time... some things are getting better. I have less fog and confusion, less headaches, my tremor is a bit better, the dizziness and nausea are much better, and my joint pain is somewhat better. I'm left with some aches and pains (arthritis I guess), general fatigue, the weird feelings of heat patches on my feet, some muscle cramping issues and I'm still feeling a bit weak on my right side. Oh and urinary issues. I do need to look into that more as it is very much a problem.

But overall - I feel human again. I'm thrilled even though I don't have an explanation for how I got to that low point.

[KoKo]

Hi ToughMama

I feel like most of last year is a blur of awfulness, like my health really spiraled downward for about 8 months. I'm glad I documented (journaled) my symptoms - it feels like they happened to a different person, because now - now I feel okay (not great, but so much better).

Glad to hear you're much better, after the crummy year you've had.

I saw a rheumatologist (awful doctor), who basically scolded me for not being on a stronger medication for my ulcerative colitis (humira or remicade), told me I have arthritis related to the UC and put me on a round of prednisone and then she told me to go back to my gastroenterologist for different medication. She was just an awful unkind and rude doctor. Anyway, I feel like she blew me off....

I wish doctors would pay more attention to their "bedside manners". Don't they understand their patients are feeling pretty rough already?

but prednisone OF COURSE made me feel much better. Like I've broken through "the fog" and can now almost function like a normal person.

So, for whatever reason - the steroids, fixing my low vitamin D, or just time... some things are getting better. I have less fog and confusion, less headaches, my tremor is a bit better, the dizziness and nausea are much better, and my joint pain is somewhat better. I'm left with some aches and pains (arthritis I guess), general fatigue, the weird feelings of heat patches on my feet, some muscle cramping issues and I'm still feeling a bit weak on my right side. Oh and urinary issues. I do need to look into that more as it is very much a problem.

But overall - I feel human again. I'm thrilled even though I don't have an explanation for how I got to that low point.

Keeping fingers crossed that you continue to improve. Keep us posted.

[ToughMama]

I'm finding it extremely isolating being in "limbo land".

My husband thinks I'm fine because the doctors have not given me a diagnosis. If I want to talk about a symptom, he says things like "everyone gets that" (twitching, cramping or whatever). Can't talk to my mother, as she is a nurse and just wants to "fix" things. Talking to friends or co-workers just brings in a lot of unhelpful suggestions like "I had a friend who had that and was cured by acupuncture" or "have you tried yoga?" or "maybe you're dehydrated".

No one really gets it, and I don't expect them to, but darn it's lonely here.

I went for a walk at lunch, got very overheated and my legs went spastic - twitching and "popping" and then I got a horrendous thigh cramp. It got better when I cooled down, but my tremor is just going CRAZY now. I'm dying to have an explanation, or at least someone to talk to when these things happen. I want to show people - like, look at how shaky my body is! I can't hold things in my hand! but "normal people" don't care about that kind of stuff (nor should they)... and it's just hard to keep it all inside.

so maybe I am just talking to myself here, or maybe I am just having a bad day... but I just wish I knew what the heck is happening to my body or at least have someone who understands - which I guess is why forums like this exist. it feels better to get that out