Life With Lupus

Can't take anymore


I see a new doctor tomorrow. I’m terrified now of doctors. I can’t hear the Lord’s voice all I hear is pain meds are BAD pain meds are BAD. So my doctor doesn’t up them but I’m in a really bad flare and can’t walk on my one leg at all. In the hospital they gave me every 4 hours but doctors have made fun of me and all sorts of stuff. How am I supposed to preservere? I can’t seem to here jesus…


Can you be very specific about where your pain is? What kind of a doctor are you going to? G.P.s just are not helpful when it comes to Lupus pain. Also, you say that ne leg is very bad. That kind of pain may have its origin in your spine. I hope there is a spine and wellness practice near you. A “nerve block” procedure may help you very much but you need to go to a group of doctors that specialize on spinal pain. Have you had a CT or an MRI to find out the origin of your pain? That is so very important and nerve blocks have to be scheduled but can be very effective. In the mean time see if you can get a prescription for a muscle relaxant such as Skelaxin. When pain shows its angry face to us when it was not so long ago that we lived pain free, then we tend to “tighten” up all over and then muscles tighten up along with it. I hope you are going to the correct kind of doctor and you should establish yourself with a rheumatologist ASAP! They may be willing to prescribe amitriptoline (not sure of the spelling) but that medication is frequently prescribed by them for Patients who have Lupus. Again, it helps with pain and very importantly SLEEP! All of the doctors are running from the opiate pain meds as there has been so much abuse of them. Have you tried Neurontin which is not an opiate med but also helps with Lupus pain? Please ask about the meds I have mentioned here as they may in unison help quite a bit and get to the source of your pain by asking for a CT of your spine. If you are advised that a nerve block would help to target the source do not hesitate to have it done as it does not hurt and it just a quick routine procedure. Finally, ask for a script to see a PT and ask to focus on your “core” muscle groups only. Not to sweat bullets on a stair master or any kind of gym equipment. Core exercises are not suppose to cause more pain if your PT understands what your goal is. I have had Lupus for 19 years now and the things mentioned here are what helped me the most. So, muscle relaxant med. Amitripoline for sleep and overall pain, Neurontin for additional address to your pain, ask about nerve block procedure or even a pain shot if it is Bursitis that is causing such leg pain. When life gets a little bit more manageable get yourself to a PP for one on one core exercise instructions and do them at home also. You need to take over control of your pain and DO NOT let it have control over you. Let me know how it goes and keep in touch. Linda


Thank your right I need to be patient on pain specialist and my new lupus doc. I also need to accept the fact that I can’t do what I wanna do right now. I had bone marrow biopsy at 14 that showed high orthrocromatic cells. I have been blue for last 4 years tried treating naturally. Then got diagnosed with glomerloneuphritits. I get innflamation of blood vessels but I think I have caused damage from the body temp of 94.5 for four years. It’s hard because this started in december… do u think God will deliver me from this?


I think that Jesus gives us the thoughts needed to address or deal with the issues that we have to deal with from one day to the next. Or perhaps the “strength” to think through what we need to do. I do not think that Jesus will just heal the health issues we have to face. Only the strength of mind to deal with them. I am not familiar with some of the health issues that you mentioned here. In any case be aggressive with any doctor and the tests they order. Get a copy of any tests that are done and try to understand the results on your own. Much information on the results can be found online. Keep a file on all the results and try to keep on top of what is going on with your own health issues. It is sometimes difficult to manage when you have multiple symptoms which it seems that you have. I hope you find some help to relieve your pain and prepare for any doctor visit with thoughts written down that you may want to discuss. Drs. are busy so you may have to slow them down a bit to deal with your health problems. Still, make sure you understand what the doctor is saying and if you do not have him re-explain it so that you can understand. I know you feel very ill but any hope in getting bettor is something you have to manage. Drs. Are just so very busy and while you should get at least 15-30 minutes of their time at each visit so very often it is only a few minutes. It will stay that way unless you have thoughts or questions that you need answered. I always feel that it is my responsibility to manage my health with the help of a doctor. I will be thinking of you and if you would fill me in on some of the health issues you just mentioned I would be interested in knowing anything you feel up to writing and explaining to me. Good night, Linda