Ok so I have SLE. I'm use to feeling weak, sore, stiff, just horrible pain. I have moved to a hole new pain scale now. The pain feels like somebody took a hammer and hit me all over making these little painful, tender, sore spots all over. Its mainly in my throat around my glands, my jaw, my neck, shoulders, arms and head. Nobody can toiuch me r I jump out my skin from the pain. This is a new thing, never experienced before. Does this specific complaint sound familiar to anyone. Thank you for your time !
Sounds like Fibromyalgia hun. It’s very painful. I can’t say for sure but I do want you to know that not all doctors believe in it yet so being diagnosed can be as challenging as it was for Lupus. Around 20 percent of Lupus patients have it as well. It will probably explain a lot of stuff in your life too. There are treatments for it thankfully. I sure hope you get the answers you are looking for and don’t be discouraged. There are a lot worse things that could be going on. I have never heard of it being traumatic so thats a plus. It just makes you feel awful. Sleep is never enough, you get nerve pain, tender to the touch. I can tell you that different climates or weather and especially electricity can effect it. Here is a link for you. Hope it helps. Good luck and stay blessed dear.
Thanks Destiny Scott (: I actually already have a diagnoses of fibro. I had it before the Lupus. Now let me ask u this, would steroids make fibro severely worse?
Yep. Sounds exactly like me. I have SLE lupus too, as well as fibromyalgia. My skin actually hurts, it’s that bad. I can’t even hug my kids. Sounds like you have fibromyalgia too. It runs hand in hand with lupus. Ask your doctor for gabapentin. It worked wonders for me.
I was diagnosed with Fibromyalgia in December, and I believe the increased pain I'm experiencing is more from the Fibro than the Lupus right now. The constant changes in the weather are making it really miserable for me. We have a fibro site, have you checked it out?
You know hun, I really am not sure. I’m still awaiting treatment for both. I have been in prednisone for my asthma for a two weeks, even though I shouldn’t be on it because of mu kidneys. I know I am staying in pain. I don’t know if it is that or not but.it’s a huge possibilty. Gabapentin helps with.it. I would ask the.pharmacist if it’s possible. They have good knowledge too.
Thanks ps! How r u feeling today? I'm still the same ): I agree with u 100 % my skin is literally hurting! What is gabapentin? Is there another name for it? Cause it sounds familiar to me! I started a round of steroids last week and that's when these other symptoms came about and intensified! Now that I started thinking about this it seems as if I've read somewhere that steroids made the fibro worse. I'm gonna have to look that up. That has to be what's going on! I haven't started my SLE treatment yet, they gave me the prescription of steroids to hold me over till my next appointment
ps said:
Yep. Sounds exactly like me. I have SLE lupus too, as well as fibromyalgia. My skin actually hurts, it's that bad. I can't even hug my kids. Sounds like you have fibromyalgia too. It runs hand in hand with lupus. Ask your doctor for gabapentin. It worked wonders for me.
I just love all of your responses! Are you in the medical field or just answering from your experience and compassion?
Destiny Scott said:
Sounds like Fibromyalgia hun. It's very painful. I can't say for sure but I do want you to know that not all doctors believe in it yet so being diagnosed can be as challenging as it was for Lupus. Around 20 percent of Lupus patients have it as well. It will probably explain a lot of stuff in your life too. There are treatments for it thankfully. I sure hope you get the answers you are looking for and don't be discouraged. There are a lot worse things that could be going on. I have never heard of it being traumatic so thats a plus. It just makes you feel awful. Sleep is never enough, you get nerve pain, tender to the touch. I can tell you that different climates or weather and especially electricity can effect it. Here is a link for you. Hope it helps. Good luck and stay blessed dear.
http://www.niams.nih.gov/Health_Info/Fibromyalgia/
THANKS FOR THE LINK! ITS WHAT I THOUGHT! NEUROTIN DIDNT WORK FOR ME. LYRICA HELPED A LITTLE MORE BUT NOT MUCH . I STARTED TAKING THEM ORIGINALLY FOR MY NEUROPATHY.
Destiny Scott said:
Susan, I am not in the medical field at all but have a good enough amount of knowledge that I should have a darn degree by now. It’s all personal sufferings and self research. If you can’t get help from someone board certified then you have to investigate every possibility and reasoning for yourself. Just be careful because some things can scare you are be misleading. I want us all to live in comfort, as well as everyone else does, I’m sure. Sometimes you have to extend your self to help others be in the know as well.
Hi--(sorry I can't see your name), BUT I can tell u I have felt EVERYTHING u mentioned.........
I use to live in NY & when I was very ill, I saw a Doctor who was fantastic.....
He told me to take plenty of baths------------salt, apple cider vinager--------anything, really. Lavender oil........There r so many things out "there" or on line & it has made a HUGH difference!!!!!
It helps better than any pain pill I have taken in the past.
If u don't do this already-----give it a try----
Fell better my Dear, for this too shall pass.
Peg
Like Destiny said, it sounds like Fibro. Unfortunately, it's pretty common for them to go hand in hand. I take Cymbalta for mine, and do get relief from it. Unfortunately, SLE patients tend to have more than just lupus.
Hi, everything you just said is exactly what I’ve started having, the pain is unbearable. It started about 6 months ago!!! I hope you get doctors to help w yours cause I can’t they think I’m crazy!!
Ask for gabapatin at least. The problem with Fibromyalgia is, like it was mentioned before, some doctors think its a garbage diagnosis. It definately is not though. It is real and sometimes excruciating pain. Gabapatin is made for nerve pain, which is what you are experiencing. If your doctor doesn’t want to help you then you might need to find a new doctor or at least ask for the medicine I talked about. I really hate the issues we face with doctors, even still today. Passing it off as hysteria, pfft. Have you ever researched what they used to treat hysteria with? Talk about rediculous.
I hope you all find relief from the pains you are suffering.
amen to that i have it and it is not a garbage can disease, let one of those doctors spend a week with me and i can show em, i have no support from my doctors either by the way i had to tell my gp how to treat me cause he didnt know where to start, i started on cymbalta, then lyrica, now neurotin, neurotin has been wonderful so far, it is not working as good as it was the first month, cymbalta and lyrica made me sick and i didnt sleep for months.
Destiny Scott said:
Ask for gabapatin at least. The problem with Fibromyalgia is, like it was mentioned before, some doctors think its a garbage diagnosis. It definately is not though. It is real and sometimes excruciating pain. Gabapatin is made for nerve pain, which is what you are experiencing. If your doctor doesn't want to help you then you might need to find a new doctor or at least ask for the medicine I talked about. I really hate the issues we face with doctors, even still today. Passing it off as hysteria, pfft. Have you ever researched what they used to treat hysteria with? Talk about rediculous.
I hope you all find relief from the pains you are suffering.
yep, its the fibro-i often refer to the pain as if i have been hit by a truck, it is so hard, especially when you dont have any support. i dont even have support from my doctor other than my rheumy, i guess you have to be dying to get a diagnosis and treatment these days. my gp flat out told me it was nothing more than a garbage can of symptoms and each symptom has to be treated or sometimes i would just have to grin and bare it and those were his exact words, i have been going to him for 7 years with the complaints you listed above to no avail. i weighed 100 lbs and i am 5'3 and was having all these problems, had hysterectomy and along with the meds i am taking i have gained a lot of weight so now he wants to blame all my problems on that, makes me sick, i am actually looking for a new one. i told him i could fill up his garbage can, lol, i have been using him for a total of 10 years and he dont even know who i am when i go in there or what my ailments are, i have to tell him .
That is really sad hun. I reallu wish you the best in finding a mew doctor.with a great bed side manor and no trash can
Meant garbage can ugh. Gos bless dear
thanks, i live in a pretty small town not many doc's around here i'd use i have to drive 21/2 to 3 hrs to see my rheumy
Destiny Scott said:
Meant garbage can ugh. Gos bless dear