I was diagnosed with the same illness. Since I have some systems but it has not converted to lupus. So they have me on medication that is used for lupus. Sweetie I can say my mom and me have felt that way all the time with pain. There is not a day that I do not feel frustrated. If you need to talk I'm here to listen.

kido818...I completely understand you about the pain and working. While I was diagnosed 14 years ago this past April. I also (when I was diagnosed) said I wouldn't let this pain mess my job up. Well, after working for 5 years of doing that, the pain became too much, and I couldn't keep it up. I don't know what kind of work you do, and I give you props for still going on. I couldn't go on myself. I found out that my manager wasn't catching the typos as much as a was. So she didn't really know how bad I was doing. After awhile, she did. I ended up my disability through my company began then. It lasted for 1 year and then became whether or not I could get the Social Security Disability...I'm one lucky person, I got it on the first try. Right now as I write this, Saturday morning @ 3:14 on August. I am having excruciating pain in my right leg. It's hard to walk right now, but I do.

I didn't mean to make this about me in the end. But I am using me as an example. You can only take the pain but so much. I tried and the pain won over. I find it difficult to type this.

I also wanted to tell you at I envy the way you can with this disease. I pray you can continue to do your work

tmanrtin1025, thank you for your response. I know the feeling of not sleeping. I have a hard time not waking up with toe cramps or pain in my hands and feet. I will continue to get up and go to work as I am forced to plug away, pain or not. At home, I seem to be more idle and focus on the pain so I am afraid this disease will worsen for me if I don't work. I just want the pain to go away!

I was diagnoised with fibro and lupus at the same time. My lupus is stable for now but there has not been a day og by since sspt 2008 that i have not hurt and i stay tired 24/7 My middle toes of both feet feel like they are frozen but yet if i touch them they are warm. Someone had pack in on the back or grab my arm and i have excruicating pain for days after. I am not able to work but I do get out of bed everyday and do the best i change. I admire u my friend to be able to continue in the work force. My mind doesnt let me stay focused enough to do so.

I'm feeling like maybe I need to accept this diagnosis. I have been unsure to really believe the Dr. got this right. Reading your symptoms and diagnosis, I'm thinking maybe I am the one in denial. I know there is no doubt I have reynaud's disease, I can accept the vague diagnosis of connective tissue disorder but for some reason I have been not accepting of the fibromyalgia diagnosis. My brother told me that fibromyalgia was not a real disease, I asked my Dr. and he said This is why my brother is not a Dr., he has no idea what he is talking about. I don't know why his comment made me feel so bad about myself. It's bad enough that I am in pain all the time but I worry too much what others think. I need to get over that, I just cant

Fibromyalgia is very real. It is recognised by the Centers for Disease Control, The National Arthritis Foundation and the World Health Organization. It is a diagnosis of exclusion. Once the doctor has done extensive testing and the results do not indicate a reason for widespread chronic pain, the diagnosis is Fibromyalgia. Fibromyalgia is a Neuro muscular disorder. The mechanism that causes it is not understood. In some people, it can be triggered by high levels of stress, an accident, emotional or physical abuse, childbirth or surgery to name some examples.

I would like to recommend that you purchase the book "Fibromyalgia for Dummies." It contains easy to understand information about this complex illness and a lot if ways to try and manage it. You can purchase it online at Amazon. Perhaps, your brother should look at it too. Knowledge is power.

I hope that my comments are helpful to you. Take care.

BTW - There are a lot of health issues that can be associated with Fibromyalgia. Among others, they include Raynauds, Lupus and connective tissue disease. Take care.

Fantod, thank you for that. Interesting enough, I slipped on ice January 2013 falling backwards hitting my head on the asphalt. I was taken to the hospital with a concussion. I was diagnosed with fibromyalgia July 2013. I never considered it may be related but I will ask my Dr. My stress levels are overwhelming as well. July 2012 both my sons were run down by a truck. Can you imagine being in the ER with your only 2 children? I really do not know how I made it through this. Maybe a combination of stress & injury? I think I will buy the book. I am learning more here on this site than I am on my own, so thank you everyone for your insight. It is truly appreciated

It's a hard diagnosis to accept. You're not alone there. I was diagnosed and got 2nd opinion and 3rd opinion and I still kept searching for more answers. I felt like docs were missing something, it's because it's a form of denial, like no, this can't be it, because this has no cure, and no real treatment that works, and I can't have that because that just won't work for me in my life. I need a disease with a cure! I need a disease with a good treatment plan so I can overcome it and move forward in life. It's just hard to accept. I was diagnosed in 2007 and still have a hard time with accepting it. I know I have it, but I always question if there's something else, or if I'm misdiagnosed. I want something with a cure..

white dolphin, that's how I feel, meanwhile my symptoms seem to be getting more painful yet if I just had a diagnosis with a cure, or at least no more pain. I keep thinking, what if it is something they are missing? However, coming to this site and reading others stories and symptoms makes me open to the idea that maybe the Dr. is right? I just don't know, ughhh!

I saw your comment on another thread about being on Plaquenil and I think gabapentin. You indicated that it did not seem to be working. A key point to remember is that the longer a chronic pain cycle continues, the harder it becomes to manage or stop. It takes time and a lot of tinkering to find the right dosage and combination of meds for each patient. We are all different. Unfortunately, there is no set formula.

You should also be taking something for sleep. This is a critical part of managing Fibromyalgia (FMS). FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Yourt muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. Amitriptyline is one of many choices for this issue. It might be helpful to have a sleep study done. It will pinpoint exactly what is going on and in turn identify the type of medication needed to ensure that you get restorative sleep.

You have to be your own best advocate to get through this. Educatiing yourself and having a doctor who will work with you in a collaborative manner is really important. Take care.

I'm really tired so I may have missed something in this thread, but I believe you said you are on plaquinil. Plaquinil take a really long time to kick in. I think personally it can be a year to totally do what it is going to do. In a way, you can't figure out what your fibro situation is until you have let the plaquinil do its work. Some rheumatologists do trials with prednisone to clarify people's stituation. Although, I've been going through this for 30 plus years, and it is still murky to figure out what is what.

I am also taking Tizzandine to help with sleep and toe cramps. The tizzandine helps me sleep, if I am lucky 4hours at best. I am so tired yet I cant sleep and if I do fall asleep, I will wake up from the pain in my hands and feet. I have been on the plaquinal since January and at best, it has helped the swelling in my feet (not the pain) and it has not helped the swelling or pain in my hands yet. Thank you for your support, since I found this site these last few days and hearing your symptoms and words of support has been the most helpful and hopeful feelings I have had in a really long time. I had a really painful day at work today and am feeling that I just cant cope with this pain. I understand the meds may take a while before they help me and thus, I will continue to do my best everyday. I so apologize for sounding like such a cry baby as I know there are others who suffer more than I and I should not be feeling this defeated. Thank you all for your kind words, I truly appreciate you

I hardly think of you as a crybaby. You are having a very difficult time with your health issues and need support. This is what we do here. We are all happy to have you here.

That being said, you need to get back into your doctor and insist that they do something different to give you more relief. You've been on Plaquenil long enough that it should be kicking in. And having to survive on 4 of less hours of sleep a night and work is ridiculous. With your level of pain, it is no wonder that you can't sleep.

If the doctor balks, get copies of your records and find someone else. Have you considered seeing a pain management specialist? You can find new doctors by calling your local hospital and asking for the physician referral department. Ask them to match you up with someone who has an interest in FMS and connective tissue disease.

Ever tried a paraffin bath to ease the pain in your hands? You can buy a paraffin bath at Bed Bath and Beyond or Amazon. You dip your hands in hot paraffin and let it cool. Great moisturizer and the heat goes deep into the tissue. Many people with RA use a paraffin bath for their hands.

Do you have long or short disability at work? Can you take some time off to address these issues and get some rest? You really need a break both physically and emotionally.

You deserve a better quality of life. Unfortunately, (and we have all been there) not only do you have to be chronically ill but you also have to kick, scream and insist until you get some relief. Don't let the doctor leave the exam room until you are satisfied. They are your employee. Make a list for your appointment so you don't forget anything. Don't let them intimidate you just because they wear a white coat. News flash - we all put our pants on the same way!

Keep asking questions and venting. You are not alone.