Well hello my name is Cammie and a few months ago I was diagnosed with Lupus. I know now that I have had Lupus a long time but it went misdiagnosed and quite frankly I was starting to think it was all in my head. In my early 20's I started losing my hair and having panic attacks. The doctors said it was stress. Over the years I would get body aches that they said was depression related. I didn't feel depressed though but what do I know right. I was sick all the time it was a common joke if someone else had it I would get it. And skin problems boil after boil some so big they would have to lance them, I even got staph a few times. They took out my tonsils and atnoids when I was 28 yrs old. I then bulged a few discs in my back and at least once a month my whole body would start hurting and my back would go out. Walking what a joke. A few months ago I got a new PC and they ran some tests my ANA came back positive as well as the double helix. More test were ran and it was determined I have lupus. A few days ago my knees, elbows and feet were hurting really bad enough to put me in tears. A day later my back went out and I can now hardly walk. Went to the Rhem today and she claims my back is unrelated. So why when I have a flare up does my back have a flare up to if it is all unrelated? She put me on steroids for the flare up but wouldn't give me any pain meds told me to see a spine doctor. Granted I believe I did injure my back but now that there is a preexisting injury would it not make sense that when I'm in a flare and there is inflammation that it would affect the old injury? Has anyone else experienced lower back pain during a flare?
Hello Cammie and welcome, glad u are here. Im new to this sight but not new to Lupus as I dx'd in 2001. I have lower back problems as well and twice so far I have had the nerves burnt on both sides of my spinal cord which has really helped my back. Since I have finally accepted the fact that I have Lupus so I have been paying more attention to all the problems I am having and I came here looking for support and now I know that I'm not crazy and it's something in my head. Because I know there are other people out there who feel the symptoms as I do. The headaches, sun sensitivity, aching muscles, joint pain. etc....
Its weird I have always been a sun and water baby and the last 4 months I have been very sensitive to the sun. Thankfully I rarely get headaches. Mine is mostly muscle, joint, skin, fatigue and sleepless nights. However recently I heard a term called lupus fog, after reading about it I am experiencing that as well and have for years. My Mom and Boyfriend would say I have selective memory or that I'm not paying attention and thats not it at all. I use to be a social butterfly talking to anyone and now I get so gumbled in conversations that I avoid them all together because I can't articulate what I am thinking. This makes me nervous because in 8 more classes I will be done with college and teaching science to middle school students. What am I going to do in the classroom if this happens to me. One day at a time right:) I'm going to go see a spinal doctor and see what they say. I am 70 lbs over weight and I have been trying to lose, they put me on thyroid meds a few months back and my boyfriend bought me a Norotrack bike. I have been on a 1200 calorie diet for 3 months, guess what I haven't lost any weight. Very frustrating. I'm hoping if I lose the weight it will help my back.
I have lower back pain and shoulder/neck pain. My rheumy said it isn't lupus related too, but a joint is a joint, isn't it?
I used to get low back pain, but since being on plaquenil/hydroxychloroquine it’s gone. Xrays showed I have arthritis of the sacroiliac joints and pelvis along with a bone spur. I used to have trouble walking or even standing some days. This was before plaquenil. My rheumy also prescribed me an anti-inflammatory. I don’t take it anymore. I just use ibuprofen now when necessary.
I also started having panic attacks and pain in my early 20s. I lost so much weight that I looked anorexic. I got down to 96 pounds. It scared me. The doctor told me it was stress and depression and that I should seek counseling.
I was diagnosed with fibromyalgia by a neurologist back in 1992.
Brain fog is the worst! I hate it. Some days are extremely bad for me like yesterday for example. I had a low fever and my head felt so “thick”. It was hard to focus and concentrate. My brain seemed like it was “on strike”. Some days are worse than others. My memory is also affected.
Congrats on almost being done with school. Try not to worry. Like you said, “One day at a time”.
Cammie, what about getting a pain management doctor on your team? I have had one for years due to back problems. I have had two back surgeries so far and possibly another one coming up. Tomorrow I see the PM doctor and will see what he wants to try first. He and I agree about everything as far as treatment goes so I am glad about that. We go the conservative route first. When I am in a flare my back hurts worse. My back affects my left thigh with nerve pain but not sciatic pain. This makes me feel worse all over and it does affect the lupus because of limitations it places on me. I would try to get your PCP to refer you to a good pain management doctor or go online and find the different doctors in you area then start reading how other patients rate them. BTW, Welcome to the group!
Thanks for the information, I’ve been seeing a chiropractor, physical therapist for years for my back. My insurance pays a very small portion of this kind of treatment. I am at the point that I just can’t afford to spend $120 per week on therapy. Especially since it doesn’t really seem to help. With or without the therapy my down time is usually the same 1-3 weeks depending on how bad it is. My chiropractor says its my pelvis but the Rhem says its my back. I even tried acupuncture. Is a pain therapist different?
yes i have had back problems to and i was told i had lupus 2 times and now it is just an autoamune deseas.i get sores in my nose on my face and heat bothers me and sun and lights.i just took myself off steroids now i will see my skin turns blue spots on them get sores in my hair my legs and feet hurt and i use to be able to walk alot now just a little bit to store or were i have to go.i do take pain meds and i do get very depressed.doc asked why do i need to know what it is as long as i am being treated.i said i dont want to know 5 years from now that my kidneys are going or any other of my organs i just keep on fighting these doctors i hate it.well let me know what use think ok ty dee
Pain therapist is not the same as a pain management doctor. Pain management is what I said so that means I was not clear at all and for that I apologize. Some anesthesiologists specialize in pain management. There are several ways they treat different pain and most insurances cover this. I have had many epidurals over the years which most of the time greatly reduces the pain. Usually it reduces mine about 90 to 95%. I have also had what is called radio frequency which helped many times and another couple of times I had the Racz procedure. When these stopped helping is when it was time for me to have back surgery and I will only have a neurosurgeon perform back surgery on me rather then an orthopedic surgeon. It is usually less invasive with a neurosurgeon and they specialize in nerves. I don't want a bone man cutting on me. Plus one of my sisters has had 3 back surgeries by 3 different ortho docs and all 3 screwed up her back!!! I have had 3 very good pain doctors and 1 horrible one. The one I have here is awesome. Tomorrow I find out whether he can help my nerve pain or whether I have another surgery. I am praying he can help but so far the docs in the other state that I lived in have not succeeded. I also tried acupuncture and it didn't help me. Massages help with general all over relief that lasts a short time.
Thanks for the information, I've been seeing a chiropractor, physical therapist for years for my back. My insurance pays a very small portion of this kind of treatment. I am at the point that I just can't afford to spend $120 per week on therapy. Especially since it doesn't really seem to help. With or without the therapy my down time is usually the same 1-3 weeks depending on how bad it is. My chiropractor says its my pelvis but the Rhem says its my back. I even tried acupuncture. Is a pain therapist different?
Wow I’m so sorry I understand back pain, I hope the doctor has good news for you. I will look into that. Thank you for the information. Getting information from doctors is like pulling teeth. My doctor actually told me to do research on the Internet when I was first diagnosed instead of answering my questions. I do believe the back is related to the lupus because yesterday she told me the steroids would not help my back and I am now on day 2 of the steroids and I can walk again. Coincidcendce I think not.
I hope the steroids continue to help. Everything is a bit scary. Drugs, to doctors, to surgeries. A good doctor will have xrays done first to see if they can see any back issues. An MRI is next usually. Just make sure you document for yourself what is going on and when and why you think it is happening. I am guessing most everyone on these boards due this. I just jot down the date and 2 or 3 words that trigger my memory. I also believe that most of us continue to learn and read and have to try different things at different times. You are not alone and don't ever feel like someone is worse then you so you should be quiet. That is never the case. We all have our good times and our bad times. If you have bulging discs then I would certainly see a specialist for the back or have your PCP order an MRI to see if they have gotten worse. It also depends on your insurance maybe?? Best of luck!
Oh my! You had to ask this question!!!smile am going to say YES to this because my back hurts so bad sometimes there is nothing that will help me - I find myself passing out , and when I wake up , BELEIVE it or not most of the pain in the back is gone (most of it). Baring with that pain in the back is ti hard for me sometimes to walk this Lupus stuff is crazy!! But all the same I don’t take the pain pills unless the pain won’t let me sleep. Hope that you feel better soon…Beverly L.
Hello Cammie,
Sounds like we've had the same past history ailments and being bad before finally being diagnosed.
As your rheumo tested your blood for any Arthritis involvement ...as Arthritis usually plays a large part with Lupus suffers and although you hurt your back, everything to do with it stems from the main central nervous system of the brain.
To me you need furthur tests and also an MRI would'nt go a miss and pelvic damage causes some pain as i've done mine in twice plus you may also have a nerve trapped.
Hugs Terri :)
Hello:) Yes they tested me for RA and said it came out negative. I was concerned before the test because my Aunt, Grandpa and Uncle all have RA but I was thankful when mine came out negative. I got my blood results back today and I don't really understand how it could be possible:
C3- 152 (norm range 86-184)
C4-28 (norm range 20-59)
Sedementation 16 (norm range 0-20)
C-reactive Protein 0.8 (norm range 0-0.8)
Creatine Kinase 53 (norm range 33-194)
Ok so all my blood tests came back within normal range, so why am I in so much pain, it doesn't make sense. The only test that came back abnormal was my urine sample which showed proteins in the urine. My knees and ankles are swollen, skin rash on hands and feet, boil on inside of my leg, and my elbows and back hurt. My doctor probably thinks I'm a psycho. Ugghh. Has anyone else's blood work come back normal when they felt bad? Blood work can't lie so I have no clue what to think. The ankles, knees, boil and rash are visibly apparent the doctor saw them. The back and elbows are not. I don't know what to think.....
Your right about the pain pills Terri I shouldn't take them, I was in so much pain the other day I was a maniac. I had a 45 minute bout of feeling sorry for myself crying and acting a fool. Then got angry with my doctor because I wanted her to take the pain away. All childish behaviors, the things we do when we feel poorly ugh no excuse:) And Beverly I have had an MRI years ago when they first diagnosed my discs but they do want to do another one. She put an order for one in the system, once my Cobra insurance kicks in I'm going to have it done.
Tez_20 said:
Hello Cammie,
Sounds like we've had the same past history ailments and being bad before finally being diagnosed.
As your rheumo tested your blood for any Arthritis involvement ...as Arthritis usually plays a large part with Lupus suffers and although you hurt your back, everything to do with it stems from the main central nervous system of the brain.
To me you need furthur tests and also an MRI would'nt go a miss and pelvic damage causes some pain as i've done mine in twice plus you may also have a nerve trapped.
Hugs Terri :)
Blood tests don't always indicated lupus even though you do have it. doctors have told me that tests are not infallible and sometimes they have to do a lot of asking questions and trial and error. I went thru a lot just like so many here. Hang in there!
BTW I saw the PM doc (pain management doc) and got a transdermal nerve injection at L5. Hope this will work now. My left leg is like a noodle for the time being but hopefully this will help. Reet
Hey Reet I will keep you in my thoughts, i hope it works for you. I herniated my L4 and L5 discs so I know how painful it is. I will defiantly look into the pain management doc when my Cobra insurance kicks in, maybe they can help me to. I was under the impression when I hurt like this it was due to inflammation therefore I thought it would show in blood work. But your right from everything I read when it comes to Lupus there are no definitive blood tests. My back is feeling better today I'm just happy I can walk again. My hip is still out to one side but not as severely it just looks like I'm leaning to one side. I was able to do some household chores: dishes and some laundry. My floors really need to be swept and mopped but there is no way. Hopefully tomorrow:)
Hello cammie,
Regarding being positive where Lupus is concerned...don't always suspect it because it's a known fact that Lupus fluctuates our bloods and can cause false readings, that's why it's best to be persistant on re-testing every 6-9mths, where i'm concerned i was born with it and i've had quite a few bloods done and they was positive all the time.
Painkillers will help but don't get over doing them and i know your aching but getting stressed out, Lupus thrieves off this besides depression.
There is also an Arthritis where bloods show negative and it's called "seronegative spondylarthropathies"
You'll find the links below helpful on explaining it and also worth asking about :)
http://www.rheumatoid-arthritis-decisions.com/Seronegative-rheumatoid-arthritis.html
Good for you, Cammie! Any little thing we can do is a big step. I am not too worried about my back yet. I have already had to surgeries at L4/5 and they helped a lot. This is now L5/S1. I have had back problem most of my life and had my first surgery 25 years ago. I am just grateful that so far I am doing pretty good despite the pain. My older sister is so much worse then I am that I have learned to count my blessings. Also, I wonder how others managed for so long without the support of a group on the internet where we don't have to try to get out of the house when we feel so lousy. Instead, I am sitting here in my lightweight sweat pants and slippers with a cat on my lap purring and getting support and trying to return the favor to others. I consider this a blessing. Gentle hugs, Reet
Thanks Reet I am doing the same. I have been home hurting since Saturday, haven't gotten out of the house until today. I wasn't going to get on any websites and talk to anyone in my mind I guess I just figured I can do this on my own. Sunday I was really depressed and sad and I called numerous friends but everyone was busy doing things, even my parents didn't have time to talk. My boyfriend is a Mason and on Saturday he is moving up to Worshful Master, I'm so proud of him but he has so much on his plate that I didn't want to bother him. I got on two different websites for ppl with Lupus and I am so glad I did. I can actually talk about it, get information and meet new ppl. I am so happy I joined these two websites its a load off my chest being able to talk about it. I'm getting misty eyed just writing this lol. I wish I had a kitty in my lap, my Chelsea passed away a few years ago she was 22 yrs old, I miss her. My boyfriend is highly allergic to cats so there won't be any kitties in my future. But we have been talking about a dog. I get lonely being home all day, I have plenty to do but it would be nice to have a companion. I think I have him just about convinced. Now its a matter of finding the right breed for us. I like Boxers but they are pretty active which may be a problem when I'm not feeling well. Hugs to you to Reet and thanks for taking the time to talk to me:)