This time I can use your feedback and help. Something new is happening here. Since last December I've been having muscle spasms in my thighs, calves and feet. Very painful. Also, my calves are atrophying. I can barely walk.
Been working with Physical Medicine and Interventional Anesthesia and have appts for more cortisone shots and a lumbar epidural in April. But, I don't think this is the whole story. I've come full circle in 2 1/2 years, from getting strong and healthy (walking 2 miles/day) and now my legs are getting weak and painful. Plus, the docs are ignoring me and not very responsive when I talk about the level of pain.
I do get muscle spasms in my legs sometimes they just sort of jump. My legs are getting weak and painful too and my balance is bad. I have been thinking I am having a flare caused by too strong an antibiotic. My pain level is crazy right now. I just sent the doctor and email so we shall see how she responds. A month ago I was feeling great walking, dancing
cleaning! Now I can hardly move. I hope it won't last long. Maybe you need a pain management doctor.
Within the last month, I have started having severe muscle cramps in my hip, legs and feet. I'm not sure what is causing it as I am not doing anything differently. I assume it is part of the disease and inactivity.
Since my original post, I've been to see the doctor (Physical Medicine) and to the ER. I was examined for spinal cord damage in the ER. Though there is no spinal cord damage. But, there is severe nerve compression from the compression fracture that occurred in 2011. So, the pain in my legs is due to nerve damage from L3, L4, L5 to S1 where the fracture is located. It will not ever go away.
I'm having a hard time with walking. My pain is controlled by hydromorphone (dilaudid) 1-2 every 4-6 hours. I can't even tolerate that much. 1 tablet every 6-8 hours puts me to sleep. I guess I cope with this until I can get the epidural in May (!?).
Feeling pretty discouraged with all of this. The impact on my life is huge. I was very lucky not to have symptoms from the fracture before this.
Hi USA Girl. Yes to the cramps and pain in the legs, no to the attributing of the calf muscles. I also have them twitch occasionally at night, like Mexican jumping beans. This may sound like a crazy idea but I've tried it on the advice of my mom, who tried it on the advice of friends who know it as a natural remedy for cramps. Get a bar of soap. Open it up and put it between your legs. If that doesn't work, then rub it over your dry legs. There is SOMETHING in soap that helps to dispel cramps! At least for all of us who've tried it and passed it along.
Drinking water is also helpful, especially in the summer when it's easy to become dehydrated. That has also helped me with cramps. Potassium and magnesium are also.supposed to help with leg cramps. I tried something from the drug store that was supposed to help but it did nothing for me: quinine.
Can you possibly switch doctors? It sounds like it might be helpful. I have found that no matter how many chances you give to a to-do doctor, they never seem to help.
I'm wishing you and others much pain reduction. Cramps are the pits!
USA Girl, I'm so sorry. I answered below before reading your update. But don't give up! Someone legit might be out there who knows of something helpful. When I get stumped over autoimmune stuff, I will write down the topic that's bothering me in the briefest terms possible, then add the word "discussion," and then press Google. Sometimes it's quite helpful. And I always am choosy.about what discussions I'll.read, as I don't care what someone who is clearly just selling a product has to say...It might be worth a try...
USAGURL said:
Since my original post, I've been to see the doctor (Physical Medicine) and to the ER. I was examined for spinal cord damage in the ER. Though there is no spinal cord damage. But, there is severe nerve compression from the compression fracture that occurred in 2011. So, the pain in my legs is due to nerve damage from L3, L4, L5 to S1 where the fracture is located. It will not ever go away.
I'm having a hard time with walking. My pain is controlled by hydromorphone (dilaudid) 1-2 every 4-6 hours. I can't even tolerate that much. 1 tablet every 6-8 hours puts me to sleep. I guess I cope with this until I can get the epidural in May (!?).
Feeling pretty discouraged with all of this. The impact on my life is huge. I was very lucky not to have symptoms from the fracture before this.
Hey, everyone, Seenie here from ModSupport! We’re having a bit of a thread revival. There’s a new member, @Chaplana, who is having terrible muscle spasms. She has posted here. Can you offer Lana any suggestions?
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Dearest Brothers & Sisters (with lupus)
I think you should know they call lupus “A Wolf in Disguise”, & also
“The Great Imitator”!! Lupus will attack like an MS flare or any other disease it chooses. The secret is not to give in to it!!! I woke up crying last night because the pain was very bad and ready to call 911!!! No joke when you are alone and you are half asleep, not thinking straight. That was a terrible wake-up call (PAIN)!! I had no more pain killer and I also have a new morphine pump implant!!! The pump should be working and I called Pain Mgr. I am 4 days away from refilling the pump. Meanwhile, if this is the pain without the filled pump–I am worse off now, more than ever. That was my sincere thought–narcotics are covering a huge amount of the real pain. I can never live without it again!! I feel no hope
for a future. I need a knee replacement and it is very bad due to the drugs and arthritis. I just spent 3 weeks on my back in the hospital for a new morphine pump. Now another surgery!!! The rehab of the knee is long and painful (more pain) No alternatives and I am fighting the BATTLE and did Not win the WAR(yet)
I found out the pump was ready to be cleaned out and refilled. The combo in the pump consists of muscle relaxes, Dilaudid, and more. I go in Monday and I was lucky or blessed they released the pain med 3 days earlier!! I was crying from the pain and I am so depressed since the episode. I thought to myself, how much can I take and why am I suffering so much with the pump. I am not ashamed that I take a heavy narcotic because I am suffering so much–it makes life Not worth Living!!
What I am ashamed of is-- my teeth and other effects from getting pain relief.!!! I have a gold mine in my mouth!! I ate an orange and my tooth broke in half plus the day before I lost so much hair on my hairbrush and I became more depressed. My scalp is like a pre-mature man’s baldness!!! I have an appointment with the dentist and I requested something to knock me out because I can not handle the pain experienced from the Lupus. The dentist told me they need a specialist to sedate me!! The price without fixing the tooth was $1900.00 plus fixing the tooth another implant with surgery to remove the other half of the tooth; that did not break(half was in the gums) $3000.00 total $4,900 to fix my tooth.
I said to the dentist, please I can not afford it. I do need, my tooth fixed and he said “which tooth was it again” I said it is in the front. Well, I have to fix this problem. I will make payments (again). Please fix it for me because I hate the way I look. I was thinking of a huge bald spot in the front of my head and now a missing tooth. I lost hair and now a tooth. I felt like a JUNKIE!!! Taking drugs for pain and not pleasure. The side effects–result in the way I look. Baldness and a missing tooth.
I can not win!!! I do not know if anyone is suffering like this but, I can tell you the road is rocky!!! Many times, I think why am I being punished?
What did I do to deserve this terrible life I live. I will only find out that answer when I met GOD. Meanwhile, I am suffering and they put animals to sleep for fewer problems. So, I am suffering more than an animal–they get put to sleep!! I get narcotics to extend my life!!! That seems to be happening now and my future does not look any different.
I am taking Plaquenil and I am praying for remission but, I am far from it
due to the amount of pain. I think at this point, I would try anything the doctors tell me. I am desperate and very ashamed of myself for this situation. I did not ask for this but, I am becoming more humble.
The pain from the Lupus has me on my knees praying to GOD for help.’
I use to joke and say the phone in heaven is off the hook. No response!!
So, here I am suffering and I have not been online because of the hospital stay for 3 weeks. Now another surgery a knee replacement what is next??? I have been strong for over 150 people with Lupus and now I am getting mentally and physically weak!! Please if you are reading this post remember, my Lupus is in a very progressive state,
They really do not know what to do for me and the doctors will never admit it. They take notes every time I have a problem. It could be a simple earache, sore throat, etc. They are PRACTICING on me. I guess that is why they call it a practice. I have been writing a book about having Lupus from a patient’s point of view. If it ever gets published most of the money will be given for research. I am looking for someone to assist me in the final rough draft. It also explains my childhood when they did not know it was Lupus. I was called “Lazy”, when I could not get up and out of bed. I was sick but my parents took the belt and called me Lazy!! Before my mother passed away, she asked me to forgive them.
I said, I forgave you a long time ago but never forgot it. I have not been online for more than 2 months. I hope, I filled in what has been going on and my experiences. May GOD, grant us all–Less Pain and more Pain-Free Days!!
Love and Blessings Mickey
PS: Please do not stop praying for me!! TY
Hello USAGURL, I noticed you are taking the same pain med. I take 8mg
and it is supposed to be for every 6 hours!! I sometimes take it every 4 hours and I run out of the med before time. I try not to take it but, my Lupus is out of control. I can not take the pain any longer. I have to take the pain meds. So, here we are taking narcotics together and we need them. (Not for pleasure) I pray it keeps working but I have been taking Dilaudid for over 10 years. I am so afraid it will no longer work and I will need something stronger. I am at the doctor’s mercy!!! I pray that the Plaquenil will work and hope that I have a remission. Well, enclosed is my email address. I hope you let me know how you are doing.
Do you have a morphine pump implant like mine???
I pray you have better days and pain-free days.
Love and Blessings Mickey
I’m sorry that you’re having such a rough time. One specific idea regarding dental issues. . . … Have you looked into a dental school? The dental services are far more affordable. It’s insane just how expensive dental care can be!