Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi all,
I have been suffering from back pain and knee joint since july, i saw physoitherapist since then. She treated me - my back pain would leave me unable to work - ive missed 8 weeks of work.
My doc has been trying various medication.
My physio told me that there was no more she could for me as she now thought it was fibromalgia
She sais it was due to my pain moving all around my back and neck and shoulders, my lack of sleep due to me constantly waking up and always being tired.
So i went to my doc in pain and asked her about it. She did some blood tests but didnt want to diagnose it as it is chromic, my infammity tests were normal.
but she gave amitripaline and they work best.
My employers are prob fed up with it.
All i want to know is what is wrong with me.
My mum has had it for years.
Has this been most peoples experience it getting it diagnoised??
I have been suffering from back pain and knee joint since july, i saw physoitherapist since then. She treated me - my back pain would leave me unable to work - ive missed 8 weeks of work.
My doc has been trying various medication.
My physio told me that there was no more she could for me as she now thought it was fibromalgia
She sais it was due to my pain moving all around my back and neck and shoulders, my lack of sleep due to me constantly waking up and always being tired.
So i went to my doc in pain and asked her about it. She did some blood tests but didnt want to diagnose it as it is chromic, my infammity tests were normal.
but she gave amitripaline and they work best.
My employers are prob fed up with it.
All i want to know is what is wrong with me.
My mum has had it for years.
Has this been most peoples experience it getting it diagnoised??
First Welcome Home to DS Sweetie!
Second, based on what you shared, you may have it indeed. Testing is a long and grueling process. Usually it's dx through elimination of everything else. It sounds as though you are at that point.
Plus, you have the hereditary factor on your plate too....with you Mom having it.
Amatriptylne is a good "oldie" medicine. If it's helping you, count your blessings sweetie.
I'm gonna go out on a limb here, but based on your verbiage, are you from the UK? Or somewhere in Europe? Austrailia?
If so, do you have any form of benefit that would cover you for being off of work? Some sort of Disability protection? If so, apply for it if you haven't done so already.
Many of us go into flares where the pain is non-stop and it makes working beyond challenging. Others have their fibro in better control and can work. Obviously that is all of our goals. But be sure to protect your job in the event that you are unable to work.
Coming here to this site you will find other suggestions, options, treatments that may work for you. I've found lots in this past year. With out the suggestions here, I wouldn't be where I'm at today.
Just remember, Fibro seems to take us down quickly, and it's seems to take forever to get back to where we once were....but the key is, that finding "your treatment regimine" and you can make get back into the swing of things. Maybe not at full throttle as before but you're still at it.
Big hugs hun and welcome.
There is no way for us to know if you actually have fibromyalgia - has your doctor run tests to rule out everything else it could be? You said your "infammity" tests were normal - not sure what that is - but is that the only test she did? There are vitamin deficiencies and even some other conditions, such as Lyme Disease, that have very similar symptoms to fibromyalgia. Most doctors want to rule those out before making a positive diagnosis for fibro.
If your mother has been diagnosed with fibro, that makes it a bit more likely that you have it also, as it is thought to be hereditary, at least in some cases, but your doctor should be testing for the other possibilities as well.
I am from the UK and my work allows me sick pay.
The doctor said because it is chronic she needs to rule out other possibilitys.
She did a full blood test.
In the meantime Do i just keep going back to the doc?
I just wish i knew what it was.
I looked up symtons and I do have a lot of them.
Get checked for Ankylosing Spondylitis. It mimics the same Fibro "tender" points only you add about 20 more. According to my doctor: At the final evaluation the accuracy of the diagnosis regarding FM by either the referring physician or by the rheumatologist at the time of the initial visit was correct in 34% of patients. This means about 66% of us are getting misdiagnosed.
http://www.medicinenet.com/ankylosing_spondylitis/article.htm
http://painmuse.org/?p=77
Next, maybe try an osteopathic doctor and try osteopathic exercises. I posted some exercises in my photo section and IMKaren posted quite a few to try too.
There is no reason why your physio should discontinue treating you just because she thinks it's fibro?? That's kerap. In fact, the more physio and movement, the better.
http://www.studentdoctor.net/blogs/omtguru/
Get your doctor to do the Patrick's Test on you.
http://painmuse.org/?p=149
Also, get your ASO (antistreptolysine titre) checked as you could have a false NEGATIVE for arthritis.
same link/article above....
Get a good, memory foam or sleep number bed and pillow. If needed, get a wedge pillow for your office chair/vehicle, arm and knee braces when doing more activity, canes, electric blanket, magic bag or walkers.
Get full lab panels done....for blood, D, B12/intrinsic factor, celiac screen and iron deficiencies, HLA-B27 gene, sedimentation rate, C-Reactive Protein (for AS), RA Factor, biotoxin screens, candida, Lyme, thyroid, Epstein Barr, parvovirus, etc. Get every test possible. Pernicious Anemia (deficient B12) can cause nerve pain, cold feet and hands, extreme fatigue, brain fog and worse, congestive heart failure.
http://www.medicinenet.com/pernicious_anemia/article.htm
Try adding new supplements such as D-Ribose (energy), SAMe (pain, antidepressant), 5-HTP (anxiety, depression, pain), L-glutamine (leaky gut) and liquid B's, calcium, magnesium and D3, Acidophilus/Bifidus (yeast and digestion).
Get a sleep study done. In the meantime, you can try the supplement Melatonin (be sure to take this and then lay down in a dark/darker room as it's light sensitive).
Read up on Amitriptyline. It may or may not be the drug for you. It certainly wasn't for me. It also has no antidote if you overdose on it.
http://www.druginfonet.com/index.php?pageID=faq/new/DRUG_FAQ/Amitriptyline.htm
Get copies of ALL your lab results, Specialist consults and xray reports.
Start a pain diary. I'm looking at a NSD (no starch diet) in January. It's going to be tough but certainly going to give it a good try.
http://zarkme.blog.com/189974/
http://www.starchfreerecipes.com/
Try new therapies such as Reflexology, massage therapy, Acupuncture and Acupressure. All work well for me.
I also am going to go to a meditation class, get proper shoes fitted by a foot doc and go to aqua therapy/pool.
Good luck! If after all this, you have no relief, then see a Rheumatologist and get a Fibromyalgia diagnosis.
I Do Believe, and certainly will Stand Corrected if I am Wrong...the Majority of People that have Fibromyalgia Also Constantly Complain about the Flu Like Symtoms...the ALL Over Body aches that Feel Like you are Coming down with a bad Virus...this has been my Mainstay since way back into my Early 20s...was the "Big Joke" in my Family, cause it would Never develope, and would Completely Up and Disappear after a few days...on its Own...has Only been Constant last 4 years...
They Do Believe there is a Genetic Link...so Since your Mom has this, chances are Very good you do as well...
there are a Multitude of Co Exsisting Symptoms that Plague many of us...some have alot of them, some have very few of them...I have had I Think over the years, the Majority of them...
I Hope you do Not have this...but if you do, Stay here with us...talk openly about what you are going thru...and we will TRY to help you...even if JUST By Listening...
Hugs to you this day...
I am going to go bug the doc again after xmas.
I am enjoying reading up on all the topics here. It feels good to hear things that make sense and dont make me feel alone.