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Life With Lupus

Im still new at this lupus disease


#1

who are you suppose to tell about your pain .im having alot of pain and when i went to my rheum doctor she doesnt reeally listen and tells me to see regular doctor , so when go to regular doctor he says that he not the one to see so who do i see about all the pain in my shoulders arms and hands . it gets so bad that i have problems even moving and have to stay in bedl


#2

Hi, sissy.

Your primary or regular doctor should be able to refer you to someone regarding your pain if they themselves do not treat it. My rheumatologist treats my pain, but some people are referred to pain management doctors to treat their pain from either their primary or their rheumatologist. Have you asked your primary doctor directly to refer to someone to treat your pain as your rheumatologist is not treating it? As your primary doctor, they should be able to answer your concerns about pain.

I hope this helps.

Hugs,

Laurie


#3

Doctors are extremely loathe to prescribe pain medications. What have you tried to get rid of your pain? Keep a list and the next time you see either doctor, tell them what you have tried that doesn't work. They need reassurance that you're not abusing your meds. Good Luck!


#4

Prednisone stops the pain dead for me, and my rheumy prescribes it or pain mess when necessary. If your rheumy isn’t managing the lupus pain… Can you get another rheumy?


#5

My doctor told me they need more documentation of my pain before they can treat it. So I go, tell them I’m still in pain, they type it in, and say see you again in 3 weeks. I don’t think anyone really cares anymore.


#6



Idioskosmos said:

Doctors are extremely loathe to prescribe pain medications. What have you tried to get rid of your pain? Keep a list and the next time you see either doctor, tell them what you have tried that doesn't work. They need reassurance that you're not abusing your meds. Good Luck!


#7

My rheumatologist prescribed me the steroid for the pain as well. However, the steroid messed up my hormone. Now I have to deal with the breakout on my chin and neck. My rheumatologist told me that I really needed the steroid for the pain. That's why she prescribed it. I think a rheumatologist is the one who will know when you will need another dr or the med for the pain. I think you should ask for another rheumatologist.


#8

HI sorry you are in so much pai n,my rhum o ly gives me tramadol which doesn't do anything.I also see a pain doctor he is also a anestesiolgit and I worked for him in outpatient facility.we found out I have crushed discs i n my neck he did 2rhizodimies on my neck what they do is put yoy tosleep and burn nerve endings about a week later is gone my rhumitologist knows him also I can't have an other rhizotomy. For a while I had2 now when my pain gets bad he gives me trigger shots in office he also gives me nucinta for pain it really works I simetimes have my primary doctor give me all my meds even frim my cardiologist you need a good couple of new drs ask for a second consultation I hope this helps you


#9

Hi Sissy,

I'm sorry you are dealing with so much pain! I can totally relate to the way you are feeling when you say you feel your rheumy isn't listening.

My first suggestion is to find another rheumy. My second suggestion is to consider the advice of a pain specialist as well. I am currently shopping around for a new rheumy but am fortunate enough to have a wonderful pain specialist, who is currently taking care of all of my pain issues.

If your shoulder is freezing up (which I noted in another post), you need to find someone quickly to get the relief you need.

Keep us posted,

Cathy In MD


#10

I have similar problems with my neck shoulders and legs. Sounds to me that it's nerve pain from compressed nerves coming from the spine. The pain is 10++++. The pain in my arms and legs made me almost non-functional. Of course, I'm only the expert on myself.

My FP referred me to Physical Medicine. And I get good relief with epidurals (spinal injections) and specific antidepressants that block the uptake of the chemicals (seretonin and norepinephrin) that cause the pain. Here's a link for more info on Physical medicine:

https://en.wikipedia.org/wiki/Physical_medicine_and_rehabilitation


#11

Thanks USAGURL,

This is great info. I clicked on the link and read the info and it lead me to another link that enables people to look for these doctors by zip code.

I appreciate that you shared this.

Cathy In MD



USAGURL said:

I have similar problems with my neck shoulders and legs. Sounds to me that it's nerve pain from compressed nerves coming from the spine. The pain is 10++++. The pain in my arms and legs made me almost non-functional. Of course, I'm only the expert on myself.

My FP referred me to Physical Medicine. And I get good relief with epidurals (spinal injections) and specific antidepressants that block the uptake of the chemicals (seretonin and norepinephrin) that cause the pain. Here's a link for more info on Physical medicine:

https://en.wikipedia.org/wiki/Physical_medicine_and_rehabilitation


#12

Hi it sounds more like fibromainyalga. I don't know any rhum dr give pain meds.I am a nurse but I had to quitso I worked with pain drs he took xrays ihad crushed discs on one side of my neck otherside was inflamed I also had rotator tear. I went a nd had a rhzotmy they put you to sleep and they burn the ends of nerves .felt bad for2weeks I had no more pain.I know just go to see him for pain meds nucinty it really works.my rhum knows I take them and he's okay with my meds my recomendation is to see a pain dr. Mine is also an anesthesiologist at hospital .I sure hope you get. Some relief


#13

Sissy,

I'm sure you have noticed some discussion about nerve pain, which is entirely possible. You would be surprised to find that many people that have been diagnosed with Lupus or another autoimmune disease, also have other issues that they have to contend with.

I have joint pain but my bigger problem is due to nerve pain that is caused by Trigeminal Neuralgia, a rare disorder that affects the trigeminal nerve in the brain and causes severe facial pain. I also have a few bulging discs, which cause me a great deal of pain in my shoulder and arm.

I've had the nerves burned in my neck that Debbie (above) spoke of and got some relief from those, at least relief that lasted for about five months. I have those repeated as often as I can. These are done through the same type of doctor that Debbie mentioned.

This is all a big maze, but that's why we all try to help each other as much as we can. Of course, it's also different for each of us.

Cathy In MD


#14

I have a separate pain management doc, who I am lucky enough to be able to see again after the nightmare of a year long move. Most states and doctors for that matter, prefer that only one doc prescribe pain meds. It can be a pain specialist or a psychiatrist that specializes in chronic pain sufferers.


#15

If you have been diagnosed your ryhmatologist should prescribe the medications for you; however, if you have not been diagnosed your regular MD will prescribe some but at some point will want a diagnosis to continue. It took 6 years for the doctors to figure out that I have Lupus and an additional year to find out I have rheumatoid arthritis. Keep going to the doctor when you are in serve pain… Something is wrong, it’s not in your head.


#16

You need a new rhemetologist. You don't need to take that crap.


#17

hi there sorry to hear your going through this but you need to see a chronic pain doctor. Im not sure where you go to be seen but m HMO my primary doctor give me my medication but I see the pain doctors to help try and control the pain. I know its hard but don't stop moving you will have good days and bad days. Also if your doctors is not listening it may be time for you to switch well pray about it I hope I helped be blessed godsgirl66


#18

Hi you can always call a hospital near you and asked about pain Dr.Most of pain Dr are also anesthesia biology Dr for hospital.I worked in an out. Pa surgical center.I am a non working nurse.I was the manager.Different centers always use them from the hospital I knew who I was going to see I didn't ask my rheumatologist just told him who my paindr was Sometimes you have to be proactive even when you feel like carp good luck finding one you likee


#19

Hi

My PCP has referred me to different specialists for different issues. I don’t go to a pain management dr because I’m not in that much pain. Although I do have disc issues in my neck and back. I’m lucky there. I can’t take nsaids I have stomach issues. Fatigue is one of my biggest issues. I hate not being able to do what I want to.
Take care
Cindy


#20

How do you get the sudden relief? Is it a professional massage or Acupuncture? I’m sorry but I can barely lift my arm from the pain?