Hello, I’m new to the site. Recently been told I may have fibro or lupus, I have so many question about when other found out, what led them to find out, how their bodies felt, and how they deal with. What’s the best treatment? What questions do I ask? How do I take charge of my care?
Hi Erica
I was told about the fibro and arthritis first then the lupus many years later. I had a long time without many problems mostly just achey and soreness. I took a antidepressant and muscle relaxer ate right and exercised and did fine I even moved and stopped all my meds for several years. I started working 12 hour shifts at night in a stressful cardiac unit and kind of stopped taking care of my self and had several hospital stays with pneumonia and started having severe fatigue and pain my doctor did blood work and sent me back to a rheumytoligist that is when we found the lupus. I worked for several more years just kind of half doing the things I was supposed to now I have been off work for 3 months and will not be going back I have changed my diet and we are working on my meds I do aqua therapy and massage I am feeling much better than I was. Do not be afraid to list the questions you want to ask your doctor and take them with you. It may take time to find what works for you but do not give up You no your body and will start to notice what makes things worst and what helps. When I first found out I was in denial the medical profession still has trouble excepting fibro at times find a good doctor that will listen to you.
That’s how I’ve felt lately. It would usually be on and off but has been steady since mid-august. I’m an Emt and would also work 12-24 hour shifts and also have a 3 year old son. since it’s fire season in my area I’ve been home because my fiancé is a fireman and will leave for fires with out notice. I don’t think I’d be able to work right now, some days I’m so tired and sore it takes everything to get my son up and fed and taken care of. I can’t take muscle relaxants because I’ve had seizures, so right now I’m taking meloxocam as an antiimflammitory and an antidepressant to try and make me sleep at night. So far the meloxocam just makes me feel like my stomach is burning and the antidepressant makes me feel weighed down and gives drymouth. I asked my medic instructor what he knew about fibromyalgia and he said it wasn’t a real disease. It’s all a little overwhelming. I’ve gained weight the last few months not being active like I was. On one foot I just want to take something and feel better, on the other I feel like I’m being overly sensitive. I feel guilty for not wrestling around with my son or taking the dog for a walk.
It is sad that people still do not see it as a real disease. Talk to your pharmatist some meds work better with food and some do not my nero doctor had me take my amitriptyline at 6 pm then lyrica at 8 pm and then go to bed at 10 and it worked really well I am not on the lyrica now to many side effects so we are seeing about other meds. I have been doing aqua therapy and it is helping with the weight I gained and the damage to my joints from arthritis and lupus Do not feel guilty you did not ask for this and children and dogs are a lot more understanding than most adults.
Dear Erica,
My first diagnosis was 'Overlap Disease', I have so many symptoms of different diseases, but at that point, did not have a solid diagnosis. Fibro is so much like so many autoimmune diseases, and autoimmune diseases are so much alike in symptoms. Both Fibro and Lupus are known as the 'great immitators', along with a few others.
http://en.wikipedia.org/wiki/The_great_imitator
They want to be absolutely sure you have Lupus before they put you on those meds. I am ever hopeful that you are seeing a Rheumatologist, as they are the true experts in diagnosis.
We have a Fibro and Lupus, and a Fibro and autoimmune group here on this very site. I'll get you those links, and wish you well. We are all here for you. I am so glad purplebutterfly responded, not only does she suffer from Fibro and Lupus, she is also a nurse.
I hope you soon get some answers and some relief.
Sending some love,
SK
http://forum.livingwithfibro.org/group/lupuscoexistingwithfibro
http://forum.livingwithfibro.org/group/fibro-and-autoimmune
There is also a dedicated Lupus group on Ben's Friends, I belong there too, as I have many symptoms of SLE, it is also a wonderful group.
Thank you for the link SK. I am seeing a normal family practice doctor. At the moment I have no insurance, she is the only doctor that charges under $50 a visit and is able to offer some medications for $5. I’m an Emt and am looking to get back to work, but there is no way I could pull a 12 or longer hour shift right now with a clear head and strength needed to perform normal duties 
Hi Erica,
We all owe so much to EMTs! You all are true life savers, my Mom just fell and broke her hip and the EMTs who came were wonderful, but it's hard work with heavy lifting and incredible stress. I'm sure like the Police, Firefighters, ER Doctors, nurses and staff , you have seen some horrific things!
Sounds like you have a wonderful Doctor, who is taking good care of you. Here is a link that may also be of help to you that we constantly share with our members, it has so many great resources, put together for us by Sheila Wall.
Hi Erika and welcome.
You've had quite a whammy thrown at you. I will be honest and say that both illnesses are game changers. Eventually you may have to (radically) alter your lifestyle to deal with what you have. You can still have a happy life but with different goals and ways to do things.
I found out about mine because I had terrible, unrelenting pain in my upper left buttock/tailbone area. I went through all kinds of tests with nothing found. I was going out of my mind not knowing why my back hurt so bad. Then my knees and elbows started to ache badly and the pain didn't resolve until a year later. It stayed gone for about a year then it came back during a particularly difficult job. I was fortunate to get a really good GP once I moved closer to Boston and she diagnosed me, I didn't believe her for many months but it finally sank in.
I deal with it through drugs - Lyrica, Effexor and Nortriptyline. When I went to my first pain mgmt clinic they asked what I was taking for the pain and I said Ibuprofin and they were shocked, saying I was the only one there on just one med. Now I know where they were coming from! I also come here for emotional support and try to keep busy by reading online or doing some light hobbies, as I can. Anything that you enjoy and can do is important to do, in order to keep you from going bonkers from the illness, especially if you can no longer work due to it.
The best treatment is what works best for your body plus what you want to do for treatment. Some people do holistic treatment only. It doesn't seem to be too effective,in my humble opinion. Many others do some holistic treatment plus pharmaceutical drugs, including Lyrica, Cymbalta and Nortriptyline. Some people suffer from side effects and can also suffer from withdrawal if getting off Lyrica or Cymbalta. Be aware that both can be difficult for some people to come off of. Some antidepressants are the same way. That being said, I'm on several of the addictive ones though no one told me about withdrawal until I came here.
Always trust your instinct on something, as only you know how you are feeling in your body. For instance, doctors may try to insist that an anti-depressant is enough for treatment but, uh, hail no, they don't take the pain away. Also, sometimes people try to sell stuff to you that promises an instant cure, There is no cure for either illness.
Make sure that your doctor respects your opinion and listens to you, Some doctors are still stuck in the old notion that stress or hormones or depression cause fibro. They may play a part in it but they don't cause it. So a simple anti-depressant wont take your pain away. And the pain will always be with you, but at a reduced amount so you feel some better.
I've never found physical therapy to help with pain. There may be some people out there who do find it useful but many here have said it hasn't helped with pain.
We are supposed to do light exercise but it's pretty hard. Just do the best you can, even if it's only to get up to use the bathroom.
I'll leave questions to ask to anther person to answer as I'm fading fast from exhaustion.
Have a good rest of the day and thank you for joining us.