Hi I am a newbie to the website but a veteran of the lupus fight. I have had lupus (SLE), fibromyalgia and arthritis for over 26 years… In viewing the website I could relate to a lot of the problems and frustrations we are all dealing with. I am glad to find a site to be able to share with each other. My main problems are with muscular pain, back problems and cognitive issues. I. Am really having a time with chronic pain. Is anyone having that problem? I have learned to take a inventory of my body every morning and see which parts are working and which I are not. Like this morning had to stop because severe headache and neck pain. Took some med. and plugging on slowly. Enough about me. I hope to share advice I have learned over the years and receive advice. We are all trying to walk this journey in our own ways. Mine is to hope pray and try 4 a
Cure.
Hi Hope
thanks for starting this discussion, and welcome to our group
I hope with your experience you can help some of us. i am really having a hard time too, my back, leg and knee pain is beyond extreme and i am like you my congnitive issues are terrible, extreme fatigue and a flu like feeling. I live in a small town in the South so i have to travel far for a specialist, i just had my second appointment with rheumy today and i was very disappointed to say the least. Two hundred some odd dollars and no answers once again. According to the doctor i have all the physical symptoms but the bloodwork has been wishy washy for the third time. I dont want to have lupus, i dont want anyone to have lupus i have just been sick for so long i just want an answer so it can be treated and hopefully i can begin to start feeling a little better. I also have DDD, carpel tunnel in both wrist, fibromyalgia and have no support other than my husband which is great i was just hoping for some answers. Prayers for everyone, and definately praying for a cure.
Hi
Welcome I have not been here long but really enjoy the site.
kel said:
I hope with your experience you can help some of us. i am really having a hard time too, my back, leg and knee pain is beyond extreme and i am like you my congnitive issues are terrible, extreme fatigue and a flu like feeling. I live in a small town in the South so i have to travel far for a specialist, i just had my second appointment with rheumy today and i was very disappointed to say the least. Two hundred some odd dollars and no answers once again. According to the doctor i have all the physical symptoms but the bloodwork has been wishy washy for the third time. I dont want to have lupus, i dont want anyone to have lupus i have just been sick for so long i just want an answer so it can be treated and hopefully i can begin to start feeling a little better. I also have DDD, carpel tunnel in both wrist, fibromyalgia and have no support other than my husband which is great i was just hoping for some answers. Prayers for everyone, and definately praying for a cure.
I know kel it can e very frustrating when you go to the rheumy and the blood work does not tell. Him definitely what you have, is it lupus , arthritis or what. We want a name to what our condition is and when. We are not given a name for what is wrong it is hard to deal with. It took me a long. Time to get diagnosed so don,t give up. Ask your rheumy what he thinks it might be and could you just try some medications to relieve your symptoms. I,m in central Midwest and I know doctors are hard to find. Just don,t ever give up and right now try to take it one day at a time easier said than done. I have been on a roller coaster ride of emotions dealing with these diseases. I prayer and hope can go along way!,
Hi Hope,
Welcome to our little family. Regardless of what you may be going through, chances are you will find someone that is going through something similar and hopefully you can find some help.
Lupus Psychosis is a condition in which Lupus affects the CNS causing cognitive issues, TIA's, severe headaches, etc. I know this personally. I have severe headaches on a nearly daily basis. I keep most of my blinds closed to a point that there is sunlight but not so open that they can help cause the headaches. It is important that you talk to your Rheumy about this as it can be attributed to other conditions. There is blockages of the veins and arteries that need to be ruled out.
I have several of the same conditions as you have mentioned as to many of the others on this site as well as the sister sites. I see a pain management doc as well as the 6 other docs for the organs being affected. If you are having pain that severe ask for a referral. It's not just meds that pain management docs deal with, but ways to help relieve pain by exercise, stretching, massage, etc.
I hope that you can find some relief, and again welcome to our group. You will be able to talk about anything here without fear of judgment.
Gentle Hugs,
DeAnne
Hi Hope,
I've found the morning check-in to be crucial as well. For me, as soon as I start having breathing difficulty, lung pain or burning, I know I'm done for the day.
I'm newly diagnosed, and am looking forward to hearing the wisdom you've gained over the years of this disease.
Lynn
Welcome Hope,
I am new to the site also, but had been working on a definitive dx for many many yrs as so many here have. I totally get how you evaluate your body each morning. It is almost comical how our symptoms can change from moment to moment and day to day isn't it? If we don't find the humor in it we could be very depressed and then we would have new symptoms -hahaha! But my issues at this time are with skin buising/lesions and back pain. But as far as head and neck pain, I see a neuro for head injections once a month and about every 6 mos I see an anethesiologist for cervical epis. It has made a huge difference for me! Back pain is just there no matter what! While praying for a cure, I am praying for a full body epi! ha The cognitive issue is absolutely the most puzzling for me intellectually cuz pain can be rationalized, but the fog and confusion just doesn't make sense to me! I am overwhelmed by how many new members the site recvs on a daily basis and I pray for us all! I wish you a better day ahead and look forward to hearing from you again!
Please look up the tag Lupus Psychosis. I found several articles and information on the cognitive issues.
It's very important that you address this with your doctor. These issues can be very dangerous. I have run red lights, forgotten my way home, forgotten my phone number, etc. Please don't ignore this symptom.
hugs,
DeAnne
Thanks for the information on Lupus Psychosis from several of you. My Rheumy has asked for an MRI of the brain, I guess I will do that. Any suggestions for handling the mood swings and anxiety that just suddenly take you over. I have done those things when I just blank out and forget where I am going and can’t complete a sentence for example. Severe headaches are a huge problem. Hope everyone has a great weekend
Those are typical of the CNS damage from lupus. As I said it can be very dangerous and scary. I have forgotten entire days, recent conversations, my way while driving, my pin number, etc. I have found that since I have been taking my meds (Prednisolone, Plaquenil and Cellcept) my cognition has been better. I truly couldn't finish a sentence when I first started seeing my Rhuemy. I still have difficulties with short term memory, forgetting words or chores, etc. Please follow through with the MRI, at least to rule anything out. TIA's and seizures are not unheard of. Tez_20 put up an article not too long ago about mini-seizures occurring during sleep, interfering with it.
Please get better and keep us up to date.
DeAnne