Fibromyalgia: Anyone out there with the same diagnosis?
Hello! I was just diagnosed this Friday with Fibromyalgia. Is there anyone out there with the same condition. I am a 37 yr old female that was pretty active until I took a drastic decline with severe increases in pain in August. Initial blood tests were pointing towards lupus, but after a thorough exam---fibromyalgia it is. My rheumatologist started me on a 2 week trial of savella. Thanks so much for any insight you may have for me 🙂
Interested in more discussions like this? Go to the Fibromyalgia Support Group.
Hi, this is my first time on here. I am 33 and have had fibro since I was 21. I also have rheumatoid arthritis and have back surgery, and some other health problems. I have been disabled because of the pain for 12 yrs now. I was extremely active at 21 and all of a sudden I started getting horrible headaches, I couldn't pick my head up off the pillow, my whole body started to hurt and just got worse and I couldn't work anymore. It took a few months and many many doctors before i was diagnosed. I have been on just about every medication made i think! I did try savella but couldn't take it because it made my heart race, I have tachycardia and it made it worse. The only thing that has helped me is Lyrica I have been on it for years now with no adverse affects. I am afraid it isn't working as well anymore. It has helped to lessen some of my flare ups. Nothing has taken the pain away. I think we have to find ways to help lessen it and unfortunately live with it. You'll figure out easier ways to do things around the house. Instead of carrying my laundry basket I drag it down the stairs lol. You never really get use to the pain because it is constantly changing and for me getting worse. I am now dealing with neck pain and pain in my face. Trying to control the RA.Constant back pain. My fibro is just kind of always there my legs always hurt the worst. Does anyone else get affected by the cold weather? I don't know if it has anything to with the fibro or something else. Once it gets below 55 if I am outside for more than15-20 min my legs start hurting and will hurt for a while. Sometimes a day or two if it is really cold and I am out there longer. They think I have raynauds can it affect your legs? Sorry got sidetracked. Some things work for some people, you just have try, it may take awhile so patience is crucial for dealing with fibro. Hope everyone is having a "good" day!
I have it also and i think pain calms down when i relax my mind and walk ,i want to try yoga i am sure it will help.
"A study published in the Journal of Pakistan Medical Association determined that vitamin D deficiency is frequently seen in patients diagnosed with fibromyalgia and nonspecific musculoskeletal pain."
Source: Pakistan Medical Association via http://vitamind3blog.com/2011/01/vitamin-d-deficiency-linked-to-myriad-diseases/
Hi. I have Fibro and RA. The diagnosis has taken several months, and I actually think it started a few years ago- I just didn't realize because I had a physically strenuous job and thought all my discomfort was linked to that- and age. I am now on Cymbalta for the Fibro, which has helped with a lot of the numbness, tingling and chills and somewhat with fatigue & aching. I also recently started Sulfasalazine (now @ 3000mg/day), for the joint pain, which has helped a good deal. I still have flares and am trying to learn what triggers them- so far seems like stress and activity. Trying to find the balance, and planning to start swimming as soon as I have funds to join the Y.
Weird. I wonder what that relationship is. Vit D deficiancy is also related to MS...
Generalized pain is because of inflammation and tight muscles. A daily walk helps with tight chest and shallow breathing. Water exercise is great to keep flexibility and mobility as it helps distribute fluids within your body. For hip/back/TMJ and muscle weakness, visit a PT (mine is a manual, Rocabado trained) for good stretches that relieve the problem. Also, consider going on the AIP diet, which is non-processed foods and pay attention to what you ate the days before you wake with lots of pain. I avoid nightshades, sugar (aspartame/sorbitol), whole wheat, dairy and "bad" fats. I do best with moderate meals with meat and veg. Snack on berries and nuts. In essence, we are "allergic" to modern life: stress, fake foods and indoor, sedentary living. Tough at first to do these things when sore and sleepy, but in the long run it is manageable. Zoloft, hydration/electrolytes help with fog.
How is the Savella working ? I just read about this new drug the other day 👍👎?
I hate to be the bad guy here but may be you didn't have it. You were misdiagnosed. I have been suffering of myalgias and arthralgias for a long time, IBS, depression, anxiety, migraines, and so on. I was finally after more than 25 years, diagnosed with it. You have no idea how many supplements, teas, and just sh1t remedies out there. Some of these will make you feel better but it won't cure you. May be you are in a remission state. If you have, it will strike again. As for me, this is the second time, I have not being able to walk. You have no idea what pain is until you are hit with an electric shock therapy in one of your legs. Your muscles twitch, shake, tremble, on their own. Then suddenly, you feel a sharp knife type of pain, burning, pins and needles. Your leg is icy cold and your other one is hot. But yet, your xray show no sign of rupture, fracture and everyone thinks you are either lying or seeking attention. Through out my life I had remission states. Well, they are getting shorter and the pain is increasing. So, please forgive me for being skeptical. The only thing keeping me alive and not walking in front of a train is my believe in God and I have two sons. I honestly wish that Fibro would make its final attack and liberate me of the sick body I have been living with. It has been long enough. This disease destroyed everything I had.
My advice for anyone in a remission state is to be careful. Fibro will take advantage of that later on. If you have physical injury, pains will come out later on in life. You won't believe the pain. During remission states, I too thought I was getting heal. I worked, I danced, I did exercise. Wrong, I was deteriorating my body faster by making it work twice as hard.
Every time I get a flare now, it lasts at least 5 months, and then the recuperation state. I am bedridden. All those years with gastrointestinal problems. I did an endoscopy and colonoscopy. They found nothing. You know why. Fibro is a neurological condition. So, doctors are not able to give you a diagnosis on time and only later when you demand it.
I don't know how many times, they poke my veins. A million times probably and found nothing. Now, I am old and decrepit. Please forgive me for been such a party pooper but why do I want a remedy now. More than half my life is gone, the things that I have lost due to this illness can not be recovered.
I am glad for you, if this is what indeed has happened. But, forgive me for taking your word like a grain of salt.
Don't give up! This is such a weird disease, but there are plenty of things to do without a prescription. Diet (non-processed, low or no sugar, avoid potato, tomato, dairy and whole wheat); lifestyle - movement is always better than rest. It also relieves pain. Fibro has to do with referred pain to muscles from accumulated fluids leaning against nerves or when the muscles are tight. So, basic yoga, PT stretches in bed, walking or water exercise are helpful. Keeping up your strenght, hydration and eating right make a difference. I do ice/heat, lidocaine patches, CBD ointment, edema massage (you tube), epsom salt baths, magnesium, B-12 and/or antidepressant for focus and a fair number of cat/cow/child/cobra yoga, clamshell stretches, piriformis stretch and edema massage before bed; THC/CBD might help calm you down before bed. There is a study for fibromyalgia: https://www.facebook.com/412638475480143/ I have had MCTD for over 20 years, still active. For gastro issues: look up GERD triggers on webmd and follow the advice there. There is no cure, but if you stick to good practices, you can keep on going.
It is true. I have read that for years. I was on vitd for years. It never went up. So. tada