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Mommyof1
04-08-2009, 11:12 AM
Does anyone suffer from this? I am on my way to a lupus diagnosis and im thinking its muscle inflammation. It goes from my knees into my back. Last night it burned and ached and i felt pressure i guess from swelling. I got sharp pains too and its horrible. My feet went totally numb and tingly. I couldn't really move. Anyone else get this?? What can be done? Its horrible and brought me to tears and is only getting worse :/ -Britt

mountaindreamer
04-08-2009, 04:12 PM
hi mommyof1

numbness, tingling, pain in toes and/or fingers....yes, seems to be a common symptom.

when do you go to your dr? hope you can get a diagnosis soon, so that you can begin developing a treatment plan.

sometimes if the pain is too bad in my legs, i take a pain med that helps me sleep some. I also use lots of pillows propping up any area that is throbbing.

Mommyof1
04-09-2009, 09:32 AM
Yeah my drs wont give me any prescription pain meds till they diagnose me they said. I took 4 ibuprofen just so it was bearable enough to go to sleep. Ill try the pillows though. I am going to Johns Hopkins Hospital in baltimore, maryland to be seen but am waiting for them to call with an appointment. I am hoping soon because its horrible. I took a nap yesterday and slept 8 hours last night and am still tired and foggy today. Hope you are well. -Brit

Oluwa
04-09-2009, 04:02 PM
Hugs..Brit..

I am sorry to know you are in pain...be careful with such large doses of Ibuprofen...hard on the stomach. Try Aleve...it is OTC Naproxen in smaller doses. Prescription strength is 500 mg whereas OTC is 220mg. Try 2 of those at the same time....

I don't know why your doctor isn't providing you with prescription pain relievers...they could still treat the symptoms without a diagnose. No one should be in pain that is intolerable. It isn't for them to gauge your level but to assess it and treat it...

Could be your sciatic nerve acting up...is their pain in the center of your butt cheek too or too perhaps inflammation around your disc..pressing on your nerve if your legs when numb and tingling to your toes...?

Did you injure your back?

Where are these sharp pains? Both legs and feet?

I would call John Hopkins to see if they received your referral for an appointment if that is why you are waiting for a call....

Maybe try a tub soak, heating pad...ice pack..

Wish you well soon, Brit..
Love,
Oluwa

Mommyof1
04-17-2009, 12:46 PM
Hey again. Thanks for the suggestions. I had aching sharp pain and puffiness under my knees last night. I used a moist heat heating pad and it helped while it was on the there and finally went away after an hour or so. I am still getting rashes and am tired and having burning pain in my legs. My recent blood tests all came back normal and the drs seems to think my heart murmur and being double jointed are causing my symptoms. He said keep an open mind and is testing me every 3 months for some stuff. He also said there is not treatment for what he thinks is wrong. I am still going a few hours away to a hospital(Johns Hopkins in Baltimore)to see their rheumatology clinic. This rheumy is a woman maybe that will make a difference! lmao anyway i know i haven't had my complement levels checked so that makes me curious. What I dont get about the drs idea is that it still doesn't explain my rashes/photosensitivity or the burning pain in my legs not my joints or the ana tests that were positive that he seems to think are irrelevant. I mean I was in a flare and feeling bad and got two positive anas. One of which was high. I just dont think that is coincidence when it also showed up around the time the rashes started reacting to the fluorescents and were getting more frequent. I am hoping this appt at the hospital will help identify something. I go May 21st for that. I still have no pain meds or treatment :/ Well I guess thats all for now then take care all hope you are well. -Britt

P.S. I had any xray of my lower back which came back normal and i do not have shooting pain down my leg i dont think its my sciatic nerve i had a nerve test done on my legs a while ago which was normal. Its not a blood flow problem either and thats why my neuro said it was raynauds. But the pain in my back is burning and aching and sometimes sharp pains the same as my legs.

wrightrs
04-17-2009, 04:20 PM
Sorry your in so much pain!!! I have leg pain too, but haven't been able to get anything done about it. I just keep telling my doctors hoping they will do something. I have Deep Vein Thrombosis which is common in Lupus. Not sure if my leg problems comes from that. Hope you find relief soon!!!

mountaindreamer
04-18-2009, 12:22 PM
hi mommyof1,

i agree with oluwa....i see no reason the dr. can't give you something for the pain. there are so many options out there that aren't narcotic. a lot of people here have success with tramadol, so you might want to ask your dr....he should be able to call in a prescription without you having to come in. You might try talking to his nurse when you call, sometimes i can get meds by just calling her.

hope you are having a decent weekend, you deserve some relief.

Faith
04-19-2009, 03:45 PM
I agree with Oluwa and Phyllis. They should be giving you something.

One thing I caught onto was you mentioned "burning" pain in your back. Have you been checked by a rhuemy for fibromyalgia? "Burning" is usually associated with fibro. Mine began in the back moved to the buttocks and then down the legs. :no:If you haven't been checked, ask the rheumy. Also there is a book by Daniel J. Wallace "Fibromyalgia for Patients and Families." For Fibro, I have be rx'd Flexerill 10mg and Zanaflex 4mg (2) per night to help relax the muscles.

Please keep us updated and let us know what happens.

Take care,

Faith:cute:

mountaindreamer
04-19-2009, 06:54 PM
hi brit,

after reading faith's post, i agree that you should be checked for fibromyalgia. The burning pain is how i describe my flares in my trigger points. It is an easy test, the rheumy simply presses on the specific trigger points, and you will know immediately because it will hurt.

I still think you should call your dr. and tell him how debilitating your pain is, and ask for help....like i said, lots of people get relief with Tramadol.

Mommyof1
04-20-2009, 01:00 PM
Hey there. Thank you guys for the posts. Yes I have been checked for fibro. When I went to see that crazy rheumy he did all my finger joints and stuff too. I don't have any tender points at all but one time I remember right about my knees it was tender in the muscle. Idk if that has any relevance to it or not. I have been feeling better lately except a migraine and some sharp joint pain on and off. Im getting a rash though today which I haven't had in a few days. My son had a seizure last night due to a high fever of 106 so that put a lot of stress on us and he has a double ear infection so we have to get tubes put in. Im not looking forward to that but I know he needs it. He had a fever of almost 103 yesterday but wasn't acting sick at all and I feel bad for not knowing. I just keep praying and I know God will help it all be ok. Thank you all for the input! I was thinking if it's not fibro couldn't it be lupus related muscle inflammation? I had a nerve test done a few months ago which was normal too and I have raynauds as well so that is my guess. I go see a new rheumy may 21st at Johns Hopkins Hospital in Baltimore Maryland. I really think it will be what gives me some answers. I will keep you all in my prayers and please pray for me and my son! God is the one giving me my strength right now. I almost don't know how much more I can take. Talk to eveyone soon. Take care. -Britt

mountaindreamer
04-20-2009, 02:50 PM
hi mommyof1,

oh your precious son, how old is he? (i apologize if you have already told us, i can't remember). My oldest daughter had a lot of trouble with high fevers, ear and throat infections....he had tubes put in her ears, and her tonsils taken out and she has been healthy every since. She was 2 when we did this, and she is 36 now.

I truly suspect that a lot of the muscle pain that we have is lupus antibodies doing their thing....i believe this is why the drs. can never find anything wrong....

hope you are feeling better,and i hope the rash does not get worse.

wrightrs
04-20-2009, 07:40 PM
I'm keeping you and your family in my prayers also!!!

Mommyof1
04-21-2009, 10:51 AM
Hey there. Thanks for the concern :) I know we lupies have problems remembering every darn thing so don't feel bad I probably repeat myself as well lol He is going to be 2 June 18th. He is doing a little better today and we have to go to the drs at 345 for his appt so we'll see what they say. I had tubes put in around his age as well for a lot of ear infections. I probably should've had my tonsils out as well but it never happened. I agree with you about the muscle pain. I have sharp joint pain on and off too and its so deep sometimes but it just comes and goes whenever it wants to. Do any of the joint pain or muscle creams work for the pain? Well thanks again for the support. Oh, earlier washing dishes I noticed one spot on my right forearm underneath felt like fire like the burning pain i get in my legs but it was there a few minutes and was gone. I also get sharp shooting pains like this sometimes accompanied with pain as well as burning. Is this muscular or what? It's hard for me to tell but I know I get joint, bone and muscle pain. Anyhow, Im rambling lol The rash did not get worse yesterday thank goodness. Ill keep you posted on dj :) *hugs* have a good day all. -Britt

Faith
04-28-2009, 05:12 PM
Hi Mommy,

Fibromyaliga effects all muscles throughout your body. The creams haven't helped me at all. Everyone is different though. Muscle relaxers seem to work for a limited time and then another type is added to ease the pain.

I hope you are feeling better.

Faith

Mommyof1
04-29-2009, 03:02 PM
hey there guys. I looked up fibro and stuff and I dont have any tender points associated with it. Also I found something that is identical to my burning pain in my legs called Meralgia Paresthetica. It is a neuropathy of the outter thighs caused by a pinched nerve most of the time due to obesity or pregnancy. Since I only weigh 109lbs and am not pregnant another cause is lupus...go figure. So Im just chalking it up to my 3rd lupus neuropathy that goes along with the raynauds(cold hands and feet) and erythromelalgia(burning and hot hands and feet). All in all I guess my lupus just doesn't like my peripheral nervous system lol. Thank you all for the suggestions though. I realized my cns is affected since I had seizures when I was 15, then my PNS as mentioned earlier and my skin due to a rash and mouth ulcers. My hands tingled so bad last night when I was trying to sleep it was driving me nuts! Well I hope everyone is well. *hugs* -Britt