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Lupus and fibromyalgia, hurt from head to toe

Aug 27, 2014 3:26 AM

anyone? had lupus and fibro? how's your nerves system? I feel it really is painful.. I can't walk/move too much because it hurt. but I always moving like Its really hard to stop. and it's so many blue in my skin, it hurt a lil if I touch it..

does anyone have the same exprience?

Aug 27, 2014 4:54 PM

Hi. I think I have fibro. Doctor thinks I might have lupus. Chronic Pain is the diagnosis now. I hurt everywhere all the time. So difficult to get things done. I never go out of house. I try to have projects in the house like crafts to keep busy and happy. I like to watch a lot of movies. Best Wishes. Keep the faith.

Sep 01, 2014 2:10 PM

I was tested in 1999 for lupus my anas where positive but my dr said due to me having no rash on my face he diagnosed me with fibro. Its been getting increasingly worse over the years and just when I thought I was at my worst bam in may my fingers and wrists started killing me and now my pip joints are all large and looking deformed I have a large bone like lump on top of my ring figer pip joint and its use to be my muscles that hurt now all my joints are hurting bad I have no idea what its from all though im thinkinging its RA my fingers are also looking deformed to me but ive been without meds and medical treatment for little over a year insurance due to kick in november..

Sep 01, 2014 11:05 PM

Christina, my mom has. Lupus and the testing for it took awhile they explained to us that if your system is not in a state of a flare up you could test negative. she has the same problems with her joints and the lumps too on her hands. I myself suffer from Fibro., possible Lupus, and yes you are right LouiseC I also suffer from Severe Djeonicm

Sep 09, 2014 5:15 PM

Very very much so, and it exhausting. Mine has really bitten my CNS. Challenging to walk, major brain fog, and vision. It's very hard when it hits this system. I was recently diagnosed with Chronic Lyme disease as well. I found out I have one brain lesion, which could be from either, but has definitely from one of the two. Sending thoughts of relief from the pain.

Sep 09, 2014 5:25 PM

Sorry, just one more thing.... DONT give up on pushing for answers. It blows my mind the amount of different thoughts of Diagnosis's with Lupus. If you think you have Lupus, keep fighting until you find a Dr. that listens to you. Even if it means going out of town, go!

Sep 10, 2014 5:41 AM

I agree with Hope4Health. I have an appointment with Dr. #8 on Friday. if he doesn't have answers, I'll head over to the Mayo Clinic even if I have to pay out of pocket. So far only 2 Drs. have pressed on my joints. Only one Dr. has given MRIs but only to a limited area of my body. Keep asking for help. Keep looking for better Drs. Come back to these communities. We can help each other find more answers. RichInFL that makes sense about testing not finding a result unless there is a "flare". That's what happened with my mom. And my new Dr. is at the same Arthritis Clinic as where my mom sees her Dr. I'm crossing my fingers for a better diagnosis. I'm bringing all of my radiology and injury reports. I'll show him my giant medical file. Maybe that will prompt him to act on something. Part of me is hoping I will have numb feet and no balance and brain fog and not be able to sit in a chair when I see the new Dr. Do you think that might do the trick?! Ha! LOL

Sep 10, 2014 5:41 AM

I agree with Hope4Health. I have an appointment with Dr. #8 on Friday. if he doesn't have answers, I'll head over to the Mayo Clinic even if I have to pay out of pocket. So far only 2 Drs. have pressed on my joints. Only one Dr. has given MRIs but only to a limited area of my body. Keep asking for help. Keep looking for better Drs. Come back to these communities. We can help each other find more answers. RichInFL that makes sense about testing not finding a result unless there is a "flare". That's what happened with my mom. And my new Dr. is at the same Arthritis Clinic as where my mom sees her Dr. I'm crossing my fingers for a better diagnosis. I'm bringing all of my radiology and injury reports. I'll show him my giant medical file. Maybe that will prompt him to act on something. Part of me is hoping I will have numb feet and no balance and brain fog and not be able to sit in a chair when I see the new Dr. Do you think that might do the trick?! Ha! LOL

Sep 10, 2014 9:25 AM

I have fibro too, do you know what's this and how treats ?

Sep 10, 2014 10:08 AM

I have fibromyalgia among other things both known and unknown. It is miserable. I am in the process of visiting many specialists to see ehat else is going on in my body. My pain is out of control and i keep hoping for a different disgnosis that could be treatable.

Sep 10, 2014 11:51 AM

I have fibro. the doctors say. my mom had lupus at 17 and it stayed in ramition

Sep 10, 2014 12:01 PM

sorry still learning how to work this site..lol but as I was saying. she past at 77. just a few years ago. she hurt like the devil , but all six of us kids never knew it, until the last six months of her life. And that didn't. kill her heparin did. She had gotten a bad batch , it was used to keep her blood, which blood cloting was because of lupus.

Sep 15, 2014 6:06 AM

HII lupus and fibro warrior , i feel better because i Like someone rn LOL .. but when i'm sad (hate) everything get worse! and OH! Also try to be vegetarian It feels so much BETTER ^^ but im always sleep sleep and sleep.. limited activity.. i always wanted to do something Good. but always tired... is this cfs?. Do what makes you HAPPY and keep FIGHTING! .. don't care about people Said :) im 16 yo anyway ^^ Andd i live bc i have my own goals & dreams! i want to stay in Germany next year that's my goal and Dreams meet someone new :) but idk of its good or not for me bc i am far away from my family :( my doctor is Great, he's the only one lupus and fibro doctor here , my doctor is rheumatology and internist ,he's listened all my pain list ^^ the only one who undestand me just Doctor and my Parents... the other just Made me stressed T.T KEEP FIGHTING and STAY STRONG! ^^ xx

Sep 15, 2014 6:22 AM

oh and the pain is suddenly came too.. I had so many nightmares lately :( yeah this illness are annoying, Hope and fighting are the only choice :)

Sep 17, 2014 12:48 PM

it's really good to know that there are other people experiencing the same as me or similar to mine I'm sorry that you guys are feeling that way my biggest problem is I think all the doctors think I'm lying and my doctor just gives up you just like I don't know I don't know great very helpful thank you I don't know what to do anymore

Sep 17, 2014 1:21 PM

I too have nightmares, even night terrors at time but I don't think its the illness as much as the medications I'm on. I find the Gabapentin and Lyrica cause me extreme dreams. I wake up in sweats after having extreme dreams that are terrorizing at times. Dreams tend to include dead things. Its unpleasant and my heart is pounding so hard when I am awaken that I can't settle enough to get back to sleep many of times.

Sep 17, 2014 6:11 PM

I don't know if you take anything like Cymbalta? I know many people who have vivid dreams, including myself. I've woken up covered in sweat. I also take Gabapentin, but I didn't have the dreams and sweating until I started Cymbalta

Sep 19, 2014 9:02 AM

I have developed shingles. already have fibro and mild lupus. so taking antiviral drugs for shingles. the pain was so bad that I phoned doctor and asked for lyrica prescription. I took one pill at 6 pm. pain from shingles was much better. however, I awoke in middle of night with very bad headache. could this be from the lyrica?

Sep 19, 2014 6:54 PM

No I took Lyrica. No headaches, could be from the shingles. It is a virus, I know you get a headache with chicken pox.

Sep 19, 2014 6:55 PM

sorry yours could be the Lyrica lol I just didn't have that problem

Sep 20, 2014 9:49 AM

Ty. I read the instructions for both meds I'm on and headache should not be a side affect of the lyrica but could be from the antiviral med. had it again last night. 3am. realized this morning that I took wrong pill and missed the antiviral drug last night but still had the headache.

Sep 20, 2014 9:47 PM

Hope you feel better curlycat!

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