Trying To Get An Opinion On This | Arthritis Information

I take 10mg. daily of Pred. and it has done it for the pain in the shoulders and upper arms, neck area.

That is where I had problems to begin with.

But for a few years prior to this happening, I've had trouble walking and with spasming cramping legs and feet and sometimes hands.

As of the last few months it has resulted in complete giveway in my left ankle which has caused me to fall.

Most bothersome is the cramping especially after activity such as making dinner.

I sit in my lounge chair and my muscles in my upper and lower legs just spasm big time. I can watch my clothes move as well as feel them with my hand.

My feet will tick back and forth with toes sometimes spreading or fanning out or turning under, and once in awhile upwards.

Now I have trouble getting dressed for socks and shoes as it causes such foot and lower leg cramping.

I cannot turn over in bed without having the chance of this happening.

My leg will stiffen painfully and my foot will turn involuntarily under with the outside ankle towards the ground and the sole of the foot pointing towards the other foot. It is very painful.

Now it happens when I am standing up and have walked to much.

My feet are dragging and toes catching on things.

I have made an appt. with a neuro. thinking this has got to be something else but I wanted to know your experiences and thoughts. Don't get in until late next month to see the Doctor.

Thank you,
KewaneeKewanee,

What a terrible thing you are going through, I have a lot of pain in my legs and feet, in fact that is how my pmr started, with my feet killing me, but I do not have spasms and cramping. maybe the dr can answer.
Georgiana
[QUOTE=Georgiana] Kewanee,What a terrible thing you are going through, I have a lot of pain in my legs and feet, in fact that is how my pmr started, with my feet killing me, but I do not have spasms and cramping. maybe the dr can answer.Georgiana
[/QUOTE]

Georgiana,
Did it progress to your shoulders and neck ect in time?

I started years ago with pain in ankles, feet and legs and it was a neuropathy they thought at that time.
Did it hurt your hips as well when it started?

Thank you for your response.
~Kewanee

Kewanee-

Neurologist is the one to see!

Have you ever tried Neurontin or topamax- those have shown results with neurological pain.

I would avoid standing or getting to fatigued by standing too long.

Good Luck

Karen

Hi, Kewanee -

Sorry to hear about those foot & leg spasms. Hard to know where the PMR stops and other ailments start sometimes! I have never had them that bad, but last year I was having bad foot cramps and sometimes cramping in my calf muscles - very painful, and usually just as I put my feet up at in the evening, or just after getting into bed.

They did go away and I've never had them as bad again. They were the worst when I was on 15 mg. of prednisone and wasn't taking chromium picolinate, so I don't know whether either of those things affected it (could it be a blood sugar thing?) or whether it was from the PMR.

I also usually eat a banana every day (plus my multivitamin) for potassium, and have upped my calcium intake since then, so either one of those things could help.

Let us know if you find a solution. Best of luck!

Wow I had almost not gotten the last post as the computor did something with Karen's post.

Ruth you were almost lost.

Thank you all for you comments it helps. Of course I'm still confused about what is what.

Going to see the Rheumy's PCP tomorrow. Hope he knows something. I usually refuse to see one of these but...Doc's are all out!

I have a Neuro. appt. set up for a number of weeks away.

Oh me. Will get to the bottom of this.

~KewaneeKewanee
   my first sign of pmr was foot and leg pain, gradually worked its way into my hips, and buttocks {lots of pain) after a while it went up in my shoulders and neck and upper arms, all of those areas still hurt but not as bad because i am on the pred. Also do not forget about the fatigue that goes along with the pain ........I mean EXTREME fatigue.
     So that is my sad tale of woe. But I will hang in there because this is going to go away............................
                                        Good Luck   Georgiana
Hi Georgiana,
I know the fatigue, it's awful.

The pain I'm having in my legs and feet are more of a stiffness not the kind of pain I got when this started in my neck and shoulders. Different.

Feels like a terrible lameness that makes it hard to get around.

The foot contorting is the worse or if my ankle gives way and I fall.

Well we'll try to see tomorrow if this is PMR or belongs to one of the other things I have.

You know I was laying in bed last night and I began to wonder if people with PMR also have another arthritic condition or autoimmune disease that sets this off?

What is this anyway? Rhetorical.

Thanks for your reponse.

Notice I'm having to log in every time I try to post anymore...is this happening to everyone?
Kewanee

[QUOTE=Georgiana] Kewanee    my first sign of pmr was foot and leg pain, gradually worked its way into my hips, and buttocks {lots of pain) after a while it went up in my shoulders and neck and upper arms, all of those areas still hurt but not as bad because i am on the pred. Also do not forget about the fatigue that goes along with the pain ........I mean EXTREME fatigue.     So that is my sad tale of woe. But I will hang in there because this is going to go away............................    &nbs p;         &nbs p;         &nbs p;         &nbs p;       Good Luck   Georgiana
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Kawanee could it be a side effect from The pred? When I was on pred neurological things like spontanious movement in my toes and fingers and lips were happening.

Also I had the problem that just when I was about to fall asleep I would awake with a shock. After not having slept for a week that way the doc put me on some medication. (the name escapes me)

Thans Marianne, and all.

I went the day before yesterday to my Rheumy's office and saw the PA which is pretty good.

He upped my Prednisone and the affect I notice is less pain that had begun again in my shoulders.

I had come down for almost a week and a half to about seven and one half milligrams.

He said alot of this could be PMR but he thinks as far as the foot contortions and problems falling from giveway is a different animal.

So keeping the neuro. appt.

That is pretty much what I wanted to know, keep it or is this PMR?

The only thing bothersome I noticed is the weight gain. Boy do I hate that and ....mentally I'm different in a way I don't like.

Ought to write a book on our experiences with this thing.

He asked me to lift my arms over my head and I did twice very well. My CRP is just some elevated. That's all.

I was hoping so much to come down, not back up.

As I was leaving he said to me...you may have to go up to 15 or 20mg.

I'm keeping my mouth shut! No, it's ok, doesn't hurt.

~KewaneeThat sucks K! we want to go down not up! lets' hope it is very temporary! Marrianne,
I was just thinking about that jumping when you go to fall asleep.

I've had that and it's horrible. Three times of that and I won't sleep.

No you can't put up with that. You may get worse for the fatigue.

Interesting about the neuro. affects on Pred. Ah ha.

Well guess I'll have to wait on that one until I can come off.

Come to think of it, I did have problems before once with my lips and chin quivering. So, who knows.

Did you have any neuro problems before the PMR? I'm wondering if pred. made something worse or is it causing it with you?

I know it gave my husband muscle problems when he had to have it for awhile.

Best Wishes,
Kewanee

I NEVER had "fasciculations" (I think that is what they call tremors) before I started the pred. I KNOW it was brought on by the pred. My toes lips and fingers and the sleep thing. Here I was thinking I had parkinson's or something making myself sick with worry!!

Awfull drug that pred! Boy hate to have to go to the neuro. if it's the prednisone doing all this.

If it did this to you it sure could be making my problems worse.

Hmmmm. Guess I best try to be sure.

How did you get off the Pred.?
~KewaneeI don't know if this is the same.... my legs would jump! about at night in bed. The Dr gave me Tofrinal 25mg and this has now stopped. These are used in higher doses for depression but I got them as a muscle relaxant and I now mostly take 50mg. No leg jumping, feeling better in myself and getting a better nights sleep. I am one who needs to sleep otherwise very GRUMPY## Still on 10mg Pred over 1 year now... hope to reduce one day soon!!Me too Lynn.

If I don't sleep I get sick. Cannot function well at all.

I take Klonopin at night for the leg thing which I've had trouble with for years now. Also Baclofen as a relaxant. So I sleep pretty well and don't notice the movements anymore.

I used to get some really weird movements in my ankles and feet as well as legs. But, my ankles would rotate repeatedly. It's a neuro. type thing.

Glad you got something that worked for you.

~KewaneeKlonipin!!! That is the drug they gave me for the sleep jerk thing! [QUOTE=marianne1952] Klonipin!!! That is the drug they gave me for the sleep jerk thing![/QUOTE]

Yea. It will help you to sleep because of it's calming affect. Guess that is what you could call it.

It has a tendency to need to be increased after some time however.

So if legs are doing something I don't know it to much unless it's the cramping when I try to bend my legs or turn over that happens. Boy awake then.

~Kewanee

hi everyone,

i dont know if you guys ore on methotrexate, but when i was taking that i had the involuntary spasms then. it would wake me and hubby up all the time and it would happen during the day also. since i have been on arava it hasnt happened.

[QUOTE=allycat]

hi everyone,

[/QUOTE]

Think Methotrexate can be awful. My husband takes it, when he is not having surgeries as it seems lately, and it bothers his muscles.

He says he does not feel as well when he takes that.

Glad you got off of it with those affects and found something that does work.

~Kewaneenot only did it affect the muscles in my legs but my arms as well. my poor other half copped a hit on the head one night. i think he was glad for me to get off methotrexate also.

I think Klonipin is an anti seisure medication. I got off it after my withdrawel from prednisone weaned.

I slept in a different bedroom than my husband when I had all those problems. It is the only way to go! Not vary romantic but when my PMR was so bad had no romance in mind!
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