Need to rant
Posted , 9 users are following.
I just need to rant.
I am so sick of this bloody (in my opinion bull****) condition, it is so frustrating.
I have been eating like a saint for 7 weeks only drinking water, exercising every weekday both cardio and weights in a hope that this will fix me, make me stronger and if anything I am just getting worse, i constantly feel like I am coming down with something. My shoulders which are always painful are constantly burning after any workout involving arms. Its not DOMS which I actually enjoy as a reprieve from the normal pain!
I know people like a label and this might be a bit controversial but to me fibro is a bunch of symptoms that drs havent actually figured out what disease process it is. Same with ME/CFS its just a collection of symptoms without anyone knowing the actual cause.
People I know, everyone on here and millions of other sites, all over telly, radio etc are constantly being diagnosed with fibro/ME/CFS. Its like everyone is getting it. Why cant they find a cause? They dont care because its not actually destroying joints or supposedly killing people. I know people with RA and millions of other things probably have it alot worse but they also have some facts, they know how and why and some have treatments which can help alot so some can still live a fairly normal life. Why does no dr give a crap about quality of life. "Fibro isnt going to kill you", well thanks for that - maybe i wish it bloody would so i wouldnt have to live in a strangers body that i cant seem to have control over. Look how much research and attention they give the flu, theres a new vaccine every year. Why oh why cant they determine what fibro is and how to treat/reverse it especially when SO MANY people are being diagnosed with it. When 100% of the population have fibro and no one can get out of bed i wonder if they might bother with some proper research.
They tell you we have tested you for everything, really have you now....dont remember getting a cortisol test or my hormones checked or a bone density scan or a muscle biopsy or a dna test to see which conditions im predisposed to. I know that costs money and you dont have the budget but perhaps if you looked into the real cause properly you wouldnt have to do a bunch loads of tests in the first place. You could do the 1 or 2 that have been created through proper research.
I feel like the fibro label gives you no real treatment options, no support and every further ailment is chalked up to that and your sensitivity to pain. Ive tried every trick in the book, meditation, better thinking, food, meds, osteopaths, kinesiology, massage, accupunture bla bla bla and none are effective.
Anyway, sorry about that, normally try to be positive but ive just had about enough today. So sick of hearing another person has been diagnosed with fibro and yet still no closer to causes or treatment, how many people need to get it before its looked at properly.
1 like, 10 replies
delores08034 charlotte1824
Posted
Charlotte, I HEAR YOU! I FEEL THE SAME WAY THAT YOU DO. I'm so tired of
this bull as well. Have tried every medication, just about every supplement, every kind of physical therapy and nothing works. How about i feel like it's getting worse. I was in the mode a few days ago that i told my husband that I wanted to end it. He said how are you going to do it. I said, I don't know. humph.... I don't feel like that today but its just an example of what this sh** takes you through. God Bless you and take care of yourself.
lori25353 charlotte1824
Posted
WOW CHARLOTTE!
I SHARE YOUR FRUSTRATION!! and your anger. the one thing ive noticed is that there are many people that get disgnosed for fibro by a GENERAL Practictioner that cant figure out what the problem is. The best way is to go see a Ruematologist They know how to test for this awful thing. Ive ran into people who have been diagnosed with fibro and later find out it has been something else that can be treated. I Feel the same as you! Its like well "we have no idea so oh well live with it" If only they knew what it was like then maybe they would get off their a_____s
and find a way to help us.
Ive had FIBRO for 18yrs and now they think ive got RHUEMATOID Arthritis Im just finding out that this can happen!! so i have to go to a Rhuematologist ! So yes fibro can cause worse problems.
Ipray you get some relief. I understand and feel your frustration and anger.
LORI
jane42175 charlotte1824
Posted
OMG, you have read my mind. Feel so frustrated and fed up. It's as if the harder you try the worse you feel. Exercise is not helping me but I keep trying and hoping in the long run it will. No point in going to gp about anything any more because whatever random symptom I have he will put it down to fibro with no attempt to find a solution or offer help of any kind. I just want to curl up in a corner and cry. All the very best and keep living in hope that you will feel better again, I'm trying to hang on to that myself 🤗 x
alley2 charlotte1824
Posted
Hi yes same here Over This way of life for me about every 5 weeks I cannot get out of bed on the other days I can but these bad flares no way I get tempatures I am really cold I ache all over not a part of my body that does not hurt it lasts till mid afternoon and goes away it gives me a real scare. I put it down to my body telling me to slow down and I don't so it makes me, I tell doc's they always say it part of the disease of late the latest is severe pain in my calves. I have GCA, PMR, Fibromalgia on 10g of pred.
christine26761 charlotte1824
Posted
really feeling for you charlotte, ive had it for over thirty year now, CFS seems to come with it. I aso have Sorgrens Syndrome, they are both autoimmune conditions which are just a huge bunch of symptoms..thats why a Rheumotologist the only doctor that can really diagnose it...there is no cure, YET..(I live in hope,) But it does go into a sort of remission and flares up now and then with a huge vengence....it is caused by a trauma, either to the body or mind...I can pinpoint when mine started some 10 years before diagnosis, like most of us on here,we just keep going to the local go with a sympton, and they are so dofferent fir each of us. I find this site unreal for help, because we are all sufferers..I was being treated for years with individual symptoms, which seemed to be a constant.,,stress makes it very much worse..it lives on our stress..but I do realize its very hard not to stress..I hope things get better in t quick tme for you charlotte, be blessed and have a lovely day. my husband is my rock and I just couldnt cope without my anchor in God.
Tannersnan charlotte1824
Posted
First Charlotte let me say I HEAR YOU LOUD AND CLEAR AND AGREE WHOLE HEARTEDLY. I am also sorry you are suffering. I too have been diagnosed with EITHER fibromyalgia or lymes arthritis 2 specialist diagnosed me. so I have had severe flare ups and ups and downs as I am sure you have as well. For me they are giving me cymbalta for depression and pain and tramadol fir pain as needed. I HATE ALL MEDICINE because all have side effects but I take it in hopes I will feel better, I take very little pain meds just try to deal with it. I have a good friend that has lymes and she recently tried CBD oil (Canabis ) legal here where I live in California. and THCA oil both do not make you high. it has helped her considerably so desperate as I am I tried it, it did not help me but there are others with fibromyalgia that sat ut has helped them. I read a very interesting book called " MEDICAL MEDIUM" By Anthony William. his theory is all of these immune dieseas are caused by epstien barr virus that we all have in us. ?????? of course he gives many options to help all eating and health food supplements I did not do his cleanse but did try some supplements and didn't find help however I didn't do full program maybe if I had it would of helped. so many theories out there. do you take any medication now for it?
nancy27623 charlotte1824
Posted
Charlotte, as they say "I feel you." 20 years ago I was diagnosed with FMS and Osteo Arthritis. Back then FMS was a laughable diagnosis (my family laughed when I complained saying the pain couldn't be that dibilitating). A doctor friend of mine (without knowing my FMS dianosis said folks given FMS diagnosis by doctors meant the doctor considered them hypochondriacs. At 50 I had to have both knees replaced due to osteo arthritis that I'd been told harmless just painful. At about same time my thyroid was found over active by a sleep apnea doctor when my husband complained about my snoring. This doctor found my heart rate off the charts. MY eyes began to bulge out my head because they said "I waited too long to seek Graves Disease treatment". REALLY? Was told radio active pill I Swallowed killed off my thyroid BUT NOW they tell me it didn't and thats why they cant control the doses of my meds. For 4 years I complained to Cardiologist of chest pain, joint pain, and shortness of breathe but because tests couldn't find anything the cardiologist diagnosed it as just FMS pain. THEN one day the Physicians Assistant recommended to Cardiologist that they perform a heart catherazation; they did and an 80% blockage of main artery in back of my heart was found and treated with a stent. Doctor laughed afterwards and said "well you taught me a less; I should listen to my patients." Osteo arthritis that doesnt cripple has crippled my feet, my hands, both knees had to be replaced because of arthritis and 1 shoulder replaced for same reason. Doctors recommend replacement of other shoulder. SO I'M HERE TO AGREE WITH YOU! FMS IS A SURFACE DIAGNOSIS BUT IN TIME A LIFE THREATENING OR LIFE CHANGING DISEASE WILL SURFACE WHICH THEY DIDNT TAKE TIME TO FIND. SOMETIMES BECAUSE DOCTORS FAIL TO LISTEN - with women doctors especially find it easy to call sympthoms FMS and send them on their way with pain pills. i had 3 cardiologist tell me it was FMS when all along I had a widow maker in the back of my heart that refused to speak up on stress tests, EkGs, Ecko Cardiograms, etc. if you can afford it I recommend you go to some big clinic that only does diagnostics and see if anything is in first stages because believe me as you get older that underlying disease will show up as life threatening or life changing and some doctor will ask why you waited so long before seeking help with the disease or illness. Why was I always tired? Not FMS it was instead my heart. My prayers are with you. KEEP RANTING SOMEONE WILL LISTEN
nancy27623 charlotte1824
Posted
Charlotte, as they say "I feel you." 20 years ago I was diagnosed with FMS and Osteo Arthritis. Back then FMS was a laughable diagnosis (my family laughed when I complained saying the pain couldn't be that dibilitating). A doctor friend of mine (without knowing my FMS dianosis said folks given FMS diagnosis by doctors meant the doctor considered them hypochondriacs. At 50 I had to have both knees replaced due to osteo arthritis that I'd been told harmless just painful. At about same time my thyroid was found over active by a sleep apnea doctor when my husband complained about my snoring. This doctor found my heart rate off the charts. MY eyes began to bulge out my head because they said "I waited too long to seek Graves Disease treatment". REALLY? Was told radio active pill I Swallowed killed off my thyroid BUT NOW they tell me it didn't and thats why they cant control the doses of my meds. For 4 years I complained to Cardiologist of chest pain, joint pain, and shortness of breathe but because tests couldn't find anything the cardiologist diagnosed it as just FMS pain. THEN one day the Physicians Assistant recommended to Cardiologist that they perform a heart catherazation; they did and an 80% blockage of main artery in back of my heart was found and treated with a stent. Doctor laughed afterwards and said "well you taught me a less; I should listen to my patients." Osteo arthritis that doesnt cripple has crippled my feet, my hands, both knees had to be replaced because of arthritis and 1 shoulder replaced for same reason. Doctors recommend replacement of other shoulder. SO I'M HERE TO AGREE WITH YOU! FMS IS A SURFACE DIAGNOSIS BUT IN TIME A LIFE THREATENING OR LIFE CHANGING DISEASE WILL SURFACE WHICH THEY DIDNT TAKE TIME TO FIND. SOMETIMES BECAUSE DOCTORS FAIL TO LISTEN - with women doctors especially find it easy to call sympthoms FMS and send them on their way with pain pills. i had 3 cardiologist tell me it was FMS when all along I had a widow maker in the back of my heart that refused to speak up on stress tests, EkGs, Ecko Cardiograms, etc. if you can afford it I recommend you go to some big clinic that only does diagnostics and see if anything is in first stages because believe me as you get older that underlying disease will show up as life threatening or life changing and some doctor will ask why you waited so long before seeking help with the disease or illness. Why was I always tired? Not FMS it was instead my heart. My prayers are with you. KEEP RANTING SOMEONE WILL LISTEN
donna76140 charlotte1824
Posted
100% agree i have fibro and spondilitis arthritis its awful i have a spur on my ankle that the doctor thought was or is still coming from my back i live on pain killers or i would be stuffed but always feel like i get the third degree well hello you live with what i so i am only 48 I feel like im 148 seriously over it i have had it for 2 years left my job that i loved after working there for 15 years I so understand what your saying i could go on and on
sending out my love thinking of you all ❤
donna76140 charlotte1824
Posted
100% agree i have fibro and spondilitis arthritis its awful i have a spur on my ankle that the doctor thought was or is still coming from my back i live on pain killers or i would be stuffed but always feel like i get the third degree well hello you live with what i so i am only 48 I feel like im 148 seriously over it i have had it for 2 years left my job that i loved after working there for 15 years I so understand what your saying i could go on and on
sending out my love thinking of you all ❤