How hard was it to get diagnosed?
By writecheck
@writecheck (40)
United States
April 12, 2010 11:09pm CST
If you suffer with fibromyalgia, how long did it take for your doctor to diagnose it? I have suffered with it for several years, and only one doctor will even verify that I actually have it. I am trying to get disability, but it's hard finding a doctor. Do any of you have any advice? Also, do you have any ideas for relieving the pain?
2 responses
@julier05 (26)
• United States
13 Apr 10
Hi, I also have Fibromyalgia. I have had it now for at least 12 years now, maybe more. It took 2 years for me to get the proper diagnosis. I was 25 and having trouble with my knees and knew that was not right. I had back troubles for many years before that (started when to get sore easier and easier when I was in a skiing accident in 4th grade). Depending on where you live, if you can get to a good Rhuematologist (the Doctors that deal with Arthritis and that kind of stuff) hopefully you will be able to find someone that will correctly diagnose you. But be prepared for idiots too. When I first was having problems I literally had a doctor tell me there was nothing physically wrong with my knees therefore the pain was all in my head. I left seeing him in tears, luckily he was a sub for my regular Doctor and if I was not able to get in with her after that I made darn sure I would NOT be seeing him! Since then I have had 5 out 6 Doctors agree that it is Fibromyalgia. The other one said what I had is Myofascial Pain Syndrome, which is very common to have when you have Fibromyalgia anyway. Sorry, I am rambling some.
I am on Disability right now. But that is because I have other things going on with me too. Depression, Anxiety, Arthritis in my spine, PTSD....ya know that kind of fun stuff :(
For me relieving the pain is hard some days. Many days most people would not know I am in pain 24/7 because I have learned to ignore a lot of it and do what I need to do. But then there are my really bad days, those days I can't hide the pain. I have massaging and heat aids around the house to help. I soak in a hot bath, that is like sacred time for me and my friends and husband know it. That is when I can get my muscles to relax the most.
I know this is going to sound like the last thing you want to do, because it is the same for me on many days...but exercise helps. Now I'm not talking going and doing running a marathon and 100 jumping jacks or 100 sit-ups. NO! Start off easy walk. Walk in your home if that is all you can do and build from there. I workout on my Wii or do yoga, stretching low-impact exercises are best. If you have a place you can swim go there that is the best thing because of no stress on your joints, just be careful not to overdo things because then you will flare up the Fibro even more.
If you ever want to talk more about it or to lean on someone feel free to contact me. It is important to remember you are not alone!
@julier05 (26)
• United States
15 Apr 10
Yeah for those that don't have it they don't understand what it is like to be in pain 24/7. Even my hubby who tries to be very understanding doesn't get it. When people would ask me what I feel I would say you know when you have the flu and you're tired and achy all over? Then you would see the light of understanding turn on until I explained that is a good day for me. Recently I had this acupressure thing done at the base of my skull. It was amazing how it help, TEMPORARILY. I had a night with relatively little pain. But the next morning when things in my neck went back to they normally are it was like all the pain was slammed back into my body all at once. (if that makes sense) See, since I have been dealing with this for so long I learned to ignore some of the aches (as I think I mentioned before), but that morning I was hurting from basically my neck down to my calves. And for once I could explain to my husband what a bad day was like. It was like I had been in an accident and stiff and sore from that. He understood that. But even watching me on good days and bad days and him describing my actions of getting out of bed in the morning looking like that of someone in their 80's or 90's he still can't understand what is like to live in pain 24/7. That is why we need to lean on each other (as a Chronic Pain community) and never forget we are not alone in this. Because this illness can be very isolating. Lots of people don't understand how one day I am able to do lots of things and other days I am walking with a cane because I can't stand up straight from back pain and need it for stairs because of my knees hurting so bad. I hope I am not scaring you, just trying to warn you so you do not get blindsided by some of these situations like I was. Take care of yourself. :)
@writecheck (40)
• United States
14 Apr 10
Thanks for responding. I went to a rheumatologist in December. He told me it was sleep apnea. I had to do a sleep study which showed I did not have sleep apnea. He then informed me that he had no idea why I was suffering pain and told me to go back to my regular doctor. Thankfully, she is trying to get me set up with a new rheumatologist. Hopefully, he will be more helpful. You are right; I do need to walk more. It is just so painful that I don't do it often enough. It's something I will have to improve on. Thanks for offering to talk. It helps to talk with people who know how bad the pain can be.
@patgalca (18181)
• Orangeville, Ontario
13 Apr 10
I have had fibromyalgia for 14 years. I was diagnosed rather quickly because I was on maternity leave at the time. I was suffering and had to go back to work soon and knew I couldn't. I got into a doctor right away who referred me to another who made the initial diagnosis and referred me to a rheumatologist. In the meantime my sister-in-law strongly suggested I had fibromyalgia. She, unknown to me, had it too so she knew the symptoms.
I spent 5 years fighting a legal battle for disability putting up with private detectives following me. I finally had to settle for a lump sum payment, long gone now. I hope you are more successful than I was.
As for pain, the best thing I found was magnesium/malic acid, comes by the name of Mag-Citrate. All fibromites are severely lacking in magnesium. Magnesium aids in over 300 bodily functions. You really should be on that. I take Calcium/Magnesium/D and a multi vitamin as well but I really felt a difference on the Mag-Citrate. Twice the two stores in my town ran out of this supplement and I suffered for a couple of weeks before I got back on it. I recommend it to all fibromites and I have heard nothing but good feedback.
Other than that, you need to learn your limitations, pace yourself, don't overdo anything, but exercise. If you don't keep moving your muscles will atrophy and you will just hurt more. That is why you feel so much pain upon waking. Start exercise slowly. Walking is the best. Increase slowly until you are up to 60 minutes a day. You can break those 60 minutes down into 4 15-minute increments.
And I drink nothing but water, herbal teas when needed.
I hope I've helped and wish you much luck.
@writecheck (40)
• United States
13 Apr 10
Thanks for the advice. It is amazing how many people still think this pain is all in your head. I'll try the supplement you suggested. I hope you have less pain as well.
