Hello! My name is Kim and I just found out yesterday that I have Fibro. I'm not really sure how I'm feeling about all this. It's confusing and scary since 6 months ago I was a perfectly healthy person. I'm glad to find someplace to talk with other sufferers and start learning more about what is happening to me!
Newly Diagnosed
- Status
Wow you must be shell shocked! Welcome to this forum. I am very curious as to what took you to the doctor in the first place and what led the doctor to diagnose you with Fibro? Please share in this very safe environment.
I don't mind sharing. It IS rather long winded though for a six month journey.
After 28 years of being a stay at home mom, I went back to work full time at one of our local hospitals this past August. At first, I assumed that I was just having a rough time adjusting to being on my feet all day, but after two months of feet and ankles so swollen and tender that I had to ice them nightly, toes going numb, along with legs aching terribly and an exhaustion that knew no limits, I was almost ready to quit when everything suddenly disappeared, and I felt okay!
That lasted for a few weeks before returning with a vengence. Now it was all over my body, every joint ached and I was waking up daily with stiff hands and feet and popping joints and now realized my knees were crackling and popping in addition the the rest of the fun. I went to my doctor for the first time at this point and he initially thought it was early RA. He prescribed Mobic and it didn't phase the pain or stiffness. I called him ten days later when I suddenly lost strength in my arms and my blow dryer felt as though it weighed a ton and made my arm shake.
He prescribed Pred. And everything except my knees vanished again, including the exhaustion. At this point he ordered the blood tests, which came back negative and diagnosed me with temporary, transient RA, caused by Twinrix vaccines given for my job.
Shortly after tapering off the pred. I experienced round 3, which is still ongoing and the worst one yet. I have experienced pain and fatigue so bad tbat one night the wrinkles in the sheets hurt! I get so stiff I walk like an 80 year old when I first get up after resting. Joint/muscle pain and stiffness increases more all the time and I would now describe my life as one where and everyday chore feels like a major workout. Went back to doc for round three who still felt it was my shot or RA, BUT RULED OUT FIBRO because I wasn't reacting to light touches on tender pointsor "other symptoms."
I saw my Rhuematologist for the first time yesterday, who after talking to me found and triggered numerous tender points I never knew I had with a firm but gentle pressure. I have also learned that the IBS, restless leg syndrome and extremely painful periods that I always had on rare occassions, but which have greatly magnified over the past year and a half were probably part of Fibro. I have also experienced the brain fog and exhaustion over the past year and didn't understand why. It's such a shock to be told I have a condition tjst a few weeks of meds will not fix. Also, in less than 36 hours I have already encountered that, "Oh, you have Fibro..." look of doubt. I really did not expect to not only learn I have Fibro, but also already experience the disbelief in less than 2 days.
I'm sorry if this is too long, but that's my journey so far. I have a lot to learn and look forward to learning it here!
After 28 years of being a stay at home mom, I went back to work full time at one of our local hospitals this past August. At first, I assumed that I was just having a rough time adjusting to being on my feet all day, but after two months of feet and ankles so swollen and tender that I had to ice them nightly, toes going numb, along with legs aching terribly and an exhaustion that knew no limits, I was almost ready to quit when everything suddenly disappeared, and I felt okay!
That lasted for a few weeks before returning with a vengence. Now it was all over my body, every joint ached and I was waking up daily with stiff hands and feet and popping joints and now realized my knees were crackling and popping in addition the the rest of the fun. I went to my doctor for the first time at this point and he initially thought it was early RA. He prescribed Mobic and it didn't phase the pain or stiffness. I called him ten days later when I suddenly lost strength in my arms and my blow dryer felt as though it weighed a ton and made my arm shake.
He prescribed Pred. And everything except my knees vanished again, including the exhaustion. At this point he ordered the blood tests, which came back negative and diagnosed me with temporary, transient RA, caused by Twinrix vaccines given for my job.
Shortly after tapering off the pred. I experienced round 3, which is still ongoing and the worst one yet. I have experienced pain and fatigue so bad tbat one night the wrinkles in the sheets hurt! I get so stiff I walk like an 80 year old when I first get up after resting. Joint/muscle pain and stiffness increases more all the time and I would now describe my life as one where and everyday chore feels like a major workout. Went back to doc for round three who still felt it was my shot or RA, BUT RULED OUT FIBRO because I wasn't reacting to light touches on tender pointsor "other symptoms."
I saw my Rhuematologist for the first time yesterday, who after talking to me found and triggered numerous tender points I never knew I had with a firm but gentle pressure. I have also learned that the IBS, restless leg syndrome and extremely painful periods that I always had on rare occassions, but which have greatly magnified over the past year and a half were probably part of Fibro. I have also experienced the brain fog and exhaustion over the past year and didn't understand why. It's such a shock to be told I have a condition tjst a few weeks of meds will not fix. Also, in less than 36 hours I have already encountered that, "Oh, you have Fibro..." look of doubt. I really did not expect to not only learn I have Fibro, but also already experience the disbelief in less than 2 days.
I'm sorry if this is too long, but that's my journey so far. I have a lot to learn and look forward to learning it here!
Janet L
Distinguished member
- Joined
- Jan 17, 2013
- Messages
- 132
- Diagnosis
- 12/2012
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- US
- State
- TX
Hi Kimberly, I'm suppose to get the Twinrix vaccines. Reading that makes me think twice and thrice. Hmmm.
I know that look of doubt, it makes me want to hide my condition sometimes, and I'm ashamed to admit, that with some negative people that I have to encounter in my life, I do just that.
Thank you very much for sharing your story Michelle, it'll be of a great help to many of us, especially others that are newly diagnosed with Fibromyalgia.
I know that look of doubt, it makes me want to hide my condition sometimes, and I'm ashamed to admit, that with some negative people that I have to encounter in my life, I do just that.
Thank you very much for sharing your story Michelle, it'll be of a great help to many of us, especially others that are newly diagnosed with Fibromyalgia.
Cynder
Active member
- Joined
- Feb 9, 2013
- Messages
- 39
- Diagnosis
- 02/2013
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- US
- State
- Utah
Hi Kim, ugh, I'm sorry you are having such pains! I've had the docs press on my 'tender points' as well, and the thing is, everything hurts, so they don't hurt any more than anything else... so I have a hard time saying yes or no about those points. 
I just say yes now, because I guess even though all the pain blends together, I am tender all over.
I am on my feet a lot too, for my hobby though, not for my job. Fortunately I have a sit-down job (computers programmer). I don't think I could survive a stand-up walk around job anymore.
Thanks for sharing your story. That's wild that it hit you so fast. Mine has been developing since probably 2006, when I first noticed my neck pain.
I just say yes now, because I guess even though all the pain blends together, I am tender all over.I am on my feet a lot too, for my hobby though, not for my job. Fortunately I have a sit-down job (computers programmer). I don't think I could survive a stand-up walk around job anymore.
Thanks for sharing your story. That's wild that it hit you so fast. Mine has been developing since probably 2006, when I first noticed my neck pain.
Janet, sorry I've scared you! If it helps, my Rhuematologist doesn't feel that the shot caused it, even though my GP does (my GP was also the one who told me it absolutely was not FIBRO). I personally still wonder if it didn't aggravate an already existing but silent condition.
Cynder, I'm now beginning to wonder if it didn't come on as quickly as I first thought. The more research I do, the more I wonder when it truly did start.
For a couple years now I have had problems several times with a stiff and sore neck, or waking with a sore arm, back, neck...or any combination of those and just put it down to sleeping wrong, or reading too long in a bad position, or even needing new pillows. I wonder now if the new job didn't cause this monster to come to life?
A few months ago I received a department transfer and now work behind a desk most of the time. Until recently, that helped my pain levels to decrease to a continual mild soreness and stiffness. Because we're understaffed, I have once again worked full shifts on my feet for three out of four days and the pain has been much, much worse. I almost could not complete my shift last night.
Question for you all: has anyone experienced hair loss? For a few nights last week my scalp was tender and sore and much like my hands do on occasion, felt burnt/sunburnt.. I left a considerable amount of hair behind after my shower today. Freaking out a little over this one!
Cynder, I'm now beginning to wonder if it didn't come on as quickly as I first thought. The more research I do, the more I wonder when it truly did start.
For a couple years now I have had problems several times with a stiff and sore neck, or waking with a sore arm, back, neck...or any combination of those and just put it down to sleeping wrong, or reading too long in a bad position, or even needing new pillows. I wonder now if the new job didn't cause this monster to come to life?
A few months ago I received a department transfer and now work behind a desk most of the time. Until recently, that helped my pain levels to decrease to a continual mild soreness and stiffness. Because we're understaffed, I have once again worked full shifts on my feet for three out of four days and the pain has been much, much worse. I almost could not complete my shift last night.
Question for you all: has anyone experienced hair loss? For a few nights last week my scalp was tender and sore and much like my hands do on occasion, felt burnt/sunburnt.. I left a considerable amount of hair behind after my shower today. Freaking out a little over this one!
1sweed
Moderator
- Joined
- Feb 4, 2013
- Messages
- 1,956
- Reason
- DX FIBRO
- Diagnosis
- 01/1995
- Country
- US
- State
- PA
This illness called fibro, has so many twists and turns to it that it is amazing any doctor would know how to treat it. I have had back pain and swelling that affected my kidney function. That stopped after a week and I felt normal again, until I had burning pain in the roof of my mouth, and then it switched to trouble breathing. Then terrible pains in my head, and sight problems, that led the doctors to believe I had MS. But the tests were normal. The burning pain in your tender spots and back can sometimes be helped by laying down with a folded towel over your back area and then take another towel get it wet and put in the microwave to warm it and lay it over your back on top of the dry towel. the moist hot towel can help stop the pain. i have used this idea when nothing else worked. I hope you get to feeling better.
Thank you! I will have to try this. This is all so new to me. It's so confusing and at times it's hard to grasp that this is not something a dose of medicine is going to fix quickly. I keep telling myself the doctor is wrong and I do not have this...
Hi Maria! my worst symptoms are stiff and achy knees and hips in general, and the fatigue and fogginess. If I am on my feet for a shift at work, my whole lower body is in pain by the end of the shift. Thankfully I don't have to do that very often. My hands are often stiff and achy, but not as bad as the hips and knees. It's just a strange thing though because usually after a few days, the pain will move somewhere else: arms and shoulders, upper back, lower back. I never really know what is going to be aching the worst. I've had a few really bad days where I felt as if I had the flu and everything hurt/felt ultra sensitive.
My doctor prescribed Neurotin and Effexor with a warning that we were starting slow and would possibly have to adjust/change medication. He was right. After a day or two any good the meds were doing seem to have disappeared and if anything, are making it harder for me to fall asleep. He did tell me to be patient because it would be a long road, so that's what I'm doing.
How about you?
My doctor prescribed Neurotin and Effexor with a warning that we were starting slow and would possibly have to adjust/change medication. He was right. After a day or two any good the meds were doing seem to have disappeared and if anything, are making it harder for me to fall asleep. He did tell me to be patient because it would be a long road, so that's what I'm doing.
How about you?
Indianagal
Active member
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- 73
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- 00/0000
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- IN
Hi Kim, So sorry you have found your way to this site but everyone here seems to be so supportive of each other. I am fairly new to this site also, I was diagnosed with fibro almost 1 1/2 years ago. Like you I have the pain all over my body, hands and feet included. The brain fog is pretty common as is the IBS. You may want to buy a book called Fibromyalgia for Dummies as it has a lot of useful information in it. Also if you can find a local support group that will help also. I am from Indiana also...but way up north. I live on the southern tip of Lake Michigan.
hi kim, my worst affected areas are my arms, elbows back and hips. i was prescribed gabapentine and tramadol, neither seem to help very much but like you i'm still newly diagnosed so at the moment it's trial and error. i had a shoulder operation in jan and back injection in feb.
we have a long rocky road ahead of us
fatigue is very debilitating as is ibs i had to give up my job a year ago i was a housekeeper now physically i can't do it, i have had to get a cleaner in once a week myself to help me keep up.
wishing you a pain free day
maria x
we have a long rocky road ahead of us
fatigue is very debilitating as is ibs i had to give up my job a year ago i was a housekeeper now physically i can't do it, i have had to get a cleaner in once a week myself to help me keep up.wishing you a pain free day
maria x
1sweed
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- DX FIBRO
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- 01/1995
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I am really sorry that you all have to go through the shocked faze of learning to live with fibro.
It is a long road, and relieving stress and worry in your life can really help. I know that sounds like a impossible request but when you worry a lot your muscles get tense and tight and they refuse to relax.
This starts a whole cycle of muscle aches and cramps, and spasms that can make us afraid to move. But doing things to help yourself relax will relieve this tense muscle pain and you will feel much better. (watching good movies, meditation, praying, reading)
Also a really good book to get is called: A Patient-Expert Walks Tou Through Everything You Need To Learn and Do. The First Year Fibromyalgia
by Claudia Craig Marek.
It is a great guide for the newly Diagnosed. It is the best book I have that explains all the symptoms and treatments and management for fibro in a very easy to understand manner.
It is a long road, and relieving stress and worry in your life can really help. I know that sounds like a impossible request but when you worry a lot your muscles get tense and tight and they refuse to relax.
This starts a whole cycle of muscle aches and cramps, and spasms that can make us afraid to move. But doing things to help yourself relax will relieve this tense muscle pain and you will feel much better. (watching good movies, meditation, praying, reading)
Also a really good book to get is called: A Patient-Expert Walks Tou Through Everything You Need To Learn and Do. The First Year Fibromyalgia
by Claudia Craig Marek.
It is a great guide for the newly Diagnosed. It is the best book I have that explains all the symptoms and treatments and management for fibro in a very easy to understand manner.
BrendaMarie
Active member
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- Feb 16, 2013
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- 34
- Diagnosis
- 10/2001
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- US
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- PA
I'm sorry to hear about your new diagnosis. There's so much to learn. What makes it "worse" is that everyone really is different when it comes to symptoms and what works for us.
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