Just a side note too to make sure you don't have a severe UTI - I used to get them chronically and it turns out I have interstitial cystitis - a chronic pelvic pain disease (along with the fibro and...
Has anyone else ever had this kind of pain? I also have lupus so I have intense hip, and ankle pain - but mostly severe knee pain. However - when it gets bad it starts with my lower legs between my...
I have the exact same problem, and at first I thought it was because I started fallin asleep with my contacts in sometimes or a new mascara...but I think it may also be related to some of the...
Hi Dani - I have faced this question a few times - and even before I was officially diagnosed with lupus and "just had fibro" (say that because half the time the fibro causes worse pain, but a lot of...
Hi danijay - I'm new to being "diagnosed" with lupus and I also have pretty severe fibro. This post really caught my attention because the biggest problems I used to have was back pain. Lately I've...
Hey guys...just an update for a few of you that were following my fatigue/broken bone feeling flare. I ended up being told my the rheumy on call in my office to go to the er yesterday...which of...
Oh I really hope your daughter doesn't end up with lupus but it sounds like you're on top of it so at least it will be caught really early. I feel like my rheumy isn't connecting the dots that maybe...
Yes, I tried lyrica for a while. Unfortunately it didn't help at all. Now I'm on savella which has definitely helped more with the muscular and skin pain and I have vulvodynia and vulvar vestibulitis...
I actually have the lupus book...well my grandfather is borrowing it at the moment because he's been going to upenn for years for interstitial lung disease and platelets etc. So we are thinking with...
I was actually just going to start a new link on this because I'm constantly in so much pain. I tried tramadol which didn't work and with my fiber being so bad I take soma as my muscle realxer and...
Hi butter flake - don't apologize for length as I always go on...I totally get the type A...I can't believe you did so much! I was just grateful i got my MBA before the worst of this started. Turns...
Have you started any new medications? I have interstitial cystitis and experience tons of bladder problems, but sometimes when I start a new medication, until my body gets used to it, or if I'm in a...
Oh...and I meant to ask, what did you mean by 'even though I was type a'? I'm 26 and got my masters degree and can work from home so I'm really trying to hold on to it...but I feel like even though I...
Hi butter flake...thank you soooo much for answering my post I was starting to think I wouldnt get any answers to this one. My pain gets so bad at times just like many others, that I almost felt bad...
So I always struggle with energy - even before I was diagnosed with lupus - understandably since I have Chronic Fatigue syndroome and Fibro as well...but as many of you read I went through a heck of...
I never put the relationship together with fiber, but my skin sensitivity has definitely worse. Also my hip sockets always seem to kill on prednisone I don't know why. All over I think I feel better,...
Thanks for the replies. I started the prednisone 2days ago (a 10day dose starting 4 days at 40 mg and working my way down) and am unfortunately not having any relief yet. I woke up around 4 am with a...
Thanks so much for your reply. I have never done it knowing that I have lupus, although I've taken both the 4 day and 10 day doses before. This last time really made me think because I couldn't...
So I've been sick for about 6 weeks now from bronchitis to chondrochondrytis (sp? inflammation of the cartilage between my ribs) to about 30 ulcers in my mouth and all the while, my joints started...
Hey Ms. Wonder - this is actually a problem I was having and was going to post it but felt like I was posting so many different things, haha. I have been on the depo shot for years now, so no longer...
Thanks for your response. It seems that this thing just keeps getting worse. I've got them on both sides of my cheeks on the inside of both my top and bottom lips, on the roof of my mouth, under my...
I've been getting mouth ulcers since I was a child. Irritated red patches in my mouth or on my tongue with a white spot in the middle. Now that I've been diagnosed, I just wondered more about them....
Thanks everyone with your responses...I had to get a bunch of previous lab work to my rheumy and am to call her tomorrow about how the plaquenil is going. Unfortunately in the meantime I have had...
This is exactly what I've been thinking about the past few weeks. It's really sad I feel that I have to choose between work - then coming home and sleeping or laying down in pain....or not...
Hey everyone - sorry I've been MIA. Turns out a had early stages of walking pneumonia and something called condochodritis - where not my lungs, but the cartilage that connects my ribs was really...
Well I guess it wasn't that cut and dry...it was about March when I got the referral and the earliest for new patients was June...but then it so happened she was on vacation so it was pushed back to...
So I know some of you know I am very new to lupus and recently started plaquenil. Well my original appointment to even see this rheumatologist was almost 6 months. Spent very little time with her -...
Hi everyone - I'm new to lupus so I know I've had some odd sypmtoms that could never be explained before - like feelings of a kidney infection when I've had none - flank pain...stabbing pain...
Thank you both for your input. I fully plan stay on this med as I've read so much about it slowing or stopping the progression of problems to our organs. I had a bout of diarrhea out of nowhere today...
So I'm new to this forum and a few of you have welcomed me with open hearts and I'm so appreciative of that. I also had asked what to expect when starting Plaquenil. The idea of diarreah doesn't...
Thank you all so much for your replies. I'm really glad to know that I'm on the right track with the medication. I do feel better having some answers because it just seemed so much more than CFIDS...
I've been on the boards for a little while now due to Fibromyalgia and Chronic Fatigue Syndrome amongst other things like IC, IBS, Vulvodynia, Hypoglycemia, gastric ulcers and the list goes on. Back...
I've been wondering this for a while, although I'm sure it's different for everyone (heck, it's even different for myself different times), but I was just wondering what kind of "tired" or fatigue...
Thanks so much for answering! It really is frustrating because the touch of my skin brushing up against the lymph nodes let alone clothes, itck! The only way to describe it is the same feeeling i...
Mrsppmrxky It's nice to meet another IC friend (as sad as that is to say). Having that chronic pain condition for so long was one of the harder ones to explain to people....well aside from vulvodynia...
Suzanne - thanks so much for your encouragement. I have to admit - one of the hardest things for me to deal with sometimes is the headaches that come with either the stiffness from Fibro, the...
Hi Stephs mom - I am a Fibro sufferer that first suffered with Severe IC for many years before being diagnosed with Fibro. My IC continued to get worse and then after a few surgeries and sickness, it...
Thanks Betty Jane - I also have severe bursitis in my right and left hips so thats a great suggestion. I'll have to go over the dosage with my uro, as I have IC Vitamin C (even tablets) aggrevate my...
Thanks for your reply Pam - Its hard to deal with problems like this where you have to retrain your body and theres nothing easy to do about it. I just got another muscular injection for the SI today...
I'm going through what they consider the "end of the line" chronic pain program now (and yea...I'm 26). But it's been a great experience and I've learned a ton. One thing I learned is my SI joing is...
I just wanted to say I'm so sorry you're going through this. The pain of fibro is hard, but the depression of someone you trusted doing that to you can sometimes be worse - or in our case, make...
I also suffer from fibro ( am having a skin hypersensitivity attack actually as we speak - and I am not ok spending the day in because i can't wear clothes..blah...besides the point). The reason I...
Hi Acheybody, I was diagnosed with both Generalized Vulvodynia and Vulvar vestibulitis last year. The beginning of this year I went through I series of injections (unpleasant but helped a great deal)...
Thanks alwayssick - I did have an ANA test and results were normal...all of my tests were done when I was at my best, but because of all of my problems they think there's still some autoimmune...
Thanks for your response! Sometimes nothing happens, but other times my skin just hurts so badly - but that also happens sometimes when I don't drink at all so maybe it's not related...i don't that...
Hey everyone. I have a question for those of you who suffer with this symptom of the disease. Way back when I had my first big "crash" from CFS, it all started with a sore throat - then what I...
Yeah - had a conversation with my dad last night about that and he told me they aren't required (he's in HR so he helped me a lot). We are going to look into the policies and see what's best....
Thank you all so much for your comments - I did see that FMLA and STD are used intermittently to protect my job which is great. We technically don't have an HR department - they sort of outsource...
Thanks for all of your input. Our firm definitely has both long and short term disability - so do I have to take FMLA before Short term disability or is that up to the employer? I'm not sure if...
Hey everyone...I just posted this in the Fibro forum - but realized this was probably the better place to post it... I'm sort of freaking out and could use any suggestions or personal experience. I...