Charlie Horse but not quite

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Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 5/1/2009 3:42 PM (GMT -6)   
Every since they took me off of the steroids all of my large muscles ache terribily. From the top of my right thumbnail down to my wrist  I ache. I wish I could explain what it's like. Sort of like the after effect of my brother punching me in the arm with a clinched fist but the ache is incredible and doesn't go away. This is going on for two weeks now. All over my body. Do you know what I'm talking about? I want to try to find somthing over the counter. The dr. won't give me anything because I have so many meds she wants to check it out before she gives me anything. It was my first time seeing her.
any suggestions?
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
Bear ye one another's burdens
Galatians 6:2 KJV


Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 5/1/2009 5:01 PM (GMT -6)   
Oh Carol, I am so sorry! Yes, I have experienced the same pain. It actually has been going on Since early march but most days it is bearable. I also have moments where i get something like a charlie horse in my hands and feet and they(toes and fingers)  just curl up, not really sure how to explain it. But I know that is very painful. One night I had it happen at the same time in both of my feet and one of my hands. It was so painful but I couldnt stop laughing at how weird my feet and hands looked. Of course my family got a pretty good kick out of it too. I havent found anything that helps with this pain. Darvocet and Ultram/tramadol doesnt help it, so I am curious about what others say about this. I have tried things like tylenol, aleve, and ibroprfin but no relief...
Hope you are doing okay! I wish you didnt have to go through all this, just know lots and lots of people are praying for you :)



21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

Regular Member

Date Joined Oct 2007
Total Posts : 323
   Posted 5/1/2009 8:05 PM (GMT -6)   
I hope you can find something for the pain. I guess bathing and heating pads don't work. I'm sure you tried that. Sorry to hear your in so much pain. Hopefully the doc. will put you back on the preds. probably not what you really want. When do you see her again. Lots of Hugs.
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     

Regular Member

Date Joined Jul 2005
Total Posts : 229
   Posted 5/1/2009 8:45 PM (GMT -6)   
I know exactly what you mean by feeling like your whole body is in a big charlie horse! Somedays I could scream. We have been driving in the car before and I've had to have my husband stop the car so I could jump out on the car and walk around the parking lot. I also used to go through a drive-thru and get a large cup of ice and rub it on my legs. I started taking Requip for restless legs and it has helped so much. I have yet to find out something that helps with the spasms in the rest of my body. Sometimes I lay on a big block of frozen ice to just freeze different places.
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.

Regular Member

Date Joined Aug 2008
Total Posts : 46
   Posted 5/1/2009 9:07 PM (GMT -6)   

im so sorry that u have to feel like this. its very annoying and painful. I had about 3 weekes of this goin on this month because i was off of one of my meds, the stupid drs office kept putting me off and not calling in my approval to the insurance. But gosh darn it i filed a grievence and they hopped to it and have been VERY polite since then

One of the things my pharmacist had me try was a combo of tylenol and adivil or ibproferen. It does seem eo help me, something about them together helps. i also have been using alleve, whic has helped some to. Mind u i was still in pain, but could feel a difference. I hope this can help u.

Warn hugs and well wishes ur way!


Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 5/2/2009 9:03 AM (GMT -6)   

Hi Jojo,nurse Amy,Debbie, Thanks for the response and the ideas. Jojo, yeah I know ya hate to make waves but sometimes th squeaky wheel gets the grease. Nurse 2, sorry my butt is too big to lay it on a slap of ice tongue . But serously I'm sorry you have this too it is one more painful problem to have to deal with. Hi Deb, your right those old stand by meds don't seem to work. I could try those big heating pads they advertise on t.v. but I'd have to use so many I'd look like a mummy! Amy I know what you mean about the fingers and toes. My hands and feet will twist up and backwards and makes you want to scream. Then you stretch them out so they are the right way then ya let go and they curl right back up again.! I showed them to my mom wants when I was there and she just went Yuuuuuuuuuuuuuklol. It does look weird now if it just didn't hurt is would be all good.

well thanks guys If I come up with something that will help I'll let you know. They on't put me back on the steroids because of the transplant so that isn't an option.

t/y for answering ladies

love ya

Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
Bear ye one another's burdens
Galatians 6:2 KJV


Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 5/3/2009 11:21 PM (GMT -6)   
HI Carol,
I get those muscle pains too.  For me, it's my Fibro.  Awful pain.  My feet are really bad for the cramping and burning. Ouch!  I hope you're doing better tonight!
Love ya!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Co-Moderator for the Lupus and Fibromyalgia forums

Regular Member

Date Joined Mar 2009
Total Posts : 98
   Posted 5/5/2009 2:39 PM (GMT -6)   
Oh Carol I just gotta bring you that tea!!! So I can feel better wink ! I have had an extremely painful muscle spasm in between my shoulders which is squeezing a nerve that runs down my arm into my fingers. I was wearing me down. I was put on lyrica. When I read the side effects I felt like crying, but it is helping me, when nothing else did. Sometimes I took extra strength tylenol and laid down with a heating pad for a little while. It helped, only when I was lieing down sad , sorry to say. God bless Tammy
I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 

Regular Member

Date Joined Feb 2006
Total Posts : 186
   Posted 5/7/2009 10:48 AM (GMT -6)   
I used to have this problem alot, all over body 'cramping' and spasms/ticks....

I had my doctor check my Vit D levels (Vit D regulates metabolism, muscles, joint function). He wasn't really convinced until it came back low and I started a high dose (3,000 IU) daily liquid supplement. Within weeks, my discomfort was gone. Everytime I see him, he is thrilled by the relief/results.

I still use a heating pad at night and one hot bath a week for my hip/lower back stiffness, but all that 'other' cramping is gone.

Hope this helps...

"There is a little naughty monkey in all of us!"
Mononucleosis / Chronic Fatigue Syndrome 1991, Depression,Endometriosis 1994,Costochondritis,Stage Two Dysplasia 1994,Asthma 1995,Tonsilitus 1999,Lupus Jan 2004,Migraines, Interstitial Cystitis  2005, GI Bleed/problems 2007.
Rx:Hydroxycloroquine (Plaquenil) 200mg 2x/day,Hydroxyzine HCL (Antihistamine) 25mg 1-2 pills at night,Albuterol Inhaler  taken as needed, Acidophilus tablets 1billion CFU, Cabergoline 1x/wk, Valtrex 1gm/daily, Vit D 2,000 IU daily, Calcium/magnesium supplement

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