Fibromyalgia -where doesn’t it hurt
Over the years we have talked a lot about the diagnosis of fibromyalgia and the signs and symptoms of fibromyalgia.
Today I would like to turn our readers attention to something else. This is the progression of your fibro.
While it is a massive subject I felt it best to put it as a very simple question. “Have your symptoms of fibromyalgia got worse over the last year?”
To get a sense of how it is working out for our readers it would be great if you could take the poll below.
But of course there is a lot more to it than just yes or no.
It would be great if you could share a bit about the development of your fibromyalgia in the last year in the comments section below. Anything you have to share will be of interest to our readers but you might want to consider some of the following questions:-
a) What have been your main symptoms of fibromyalgia over the last twelve months?
b) How have each of these symptoms changed over this time? Are any of the symptoms new?
c) Have you changed your therapy for fibromyalgia?
d) Have you made any lifestyle changes? How have these impacted on your fibro?
e) What is your support network like?
f) On balance are you positive about your future with fibro?
Thanks very much in advance!
| OneTear | As mean as it sounds…pull yourself out of this depression! I was lucky enough and found a good doctor. The doctor I had seen diagnosed me with Fibro and handed me a 10 page printout, “here you go, read up on it”. That was her understanding of help. Then I found a doctor who actually understood what I’m going through, and he gave me pain medication. He send me to a pain clinic, but when the pain was under control I saw him again. He manages all my medications now. There are some who don’t understand dependency and addiction. My body depends on the pain medication, but not my mind. Once my pain was under control I picked up my life and I continued to live it instead of throwing it away. I lost over 100 lbs, I had another baby, we adopted a second puppy, and last year we moved to a bigger house with a huge yard. I learned that giving in to this sickness is your death. You might still be breathing, but on the inside you are dead. I was dead. Now I make sure I manage my medication, and try to live healthy, and just act like the sickness does not exist. I picked up my dreams, and decided that I wanted to live those dreams! Sure I have bad days too, but I learned to deal with them. I take hot baths in a bathtub that my plumber put in, but I did all the tile work. I have to say, hubby doesn’t like physical work, so I do most men’s jobs around the house myself. Staying active is the secret!! I caught a pretty nasty bug over Thanksgiving and have been in bed for a week now. I got up today and saw a doctor to get rid of the secondary bacterial infection I have now. Getting out of bed was the hardest thing I have ever done! But I know it will hurt like this only a few days, and then I’m back to my “normal”, which for sure isn’t the norm. I give myself time when I do my daily work. I gave myself over 6 months to tile my bathroom, but I got it done. My house isn’t spotless, and my kids get pizza at least once a week, but doing things myself, getting the job done gives me a high that powers my life 😉 Last year alone I had my very first garden, and grew my own vegetables in garden boxes that I designed and build together with hubby. I was the one who put a wood floor in hubby’s office, and tiled my new bathroom. I took the car apart after the shop wanted $1000 + for a new AC compressor and fixed the problem myself for about $220, but that included the tools I had to buy. I took the carburetor on our lawnmower apart and boiled it. Now it runs like new again. I learned how to give my dog the necessary shots to make her feel better. I started preparing the dog food from scratch since one of my 2 dogs has bad allergies. I taught my daughter to not be afraid of riding a bike, and I taught my son how to drive a car. The list goes on and on, but only because I decided not to give up. I hope you understand that your family might never understand the pain you endure every day, all they see is that you gave up! They don’t hate you. They don’t tell you all the hurtful things because they hate you, they treat you this way because they love you, and it hurts them to see that you simply gave up. A part of them unconsciously thinks that you don’t love them, or you wouldn’t just give up! My advice to you is to decide what you want, and then go and get it! Find a doctor that will help you control the pain. It will hurt like hell in the beginning, but after a while you will actually have less pain if you work out every day. When the pain hits start stretching those body parts first. Get a muscle relaxer that works for you. Go on walks. Set goals of cooking something really good once a week, and then twice. Plant a garden. There is nothing that gives you more hope than watching your own achievements grow. Just don’t give in! I had to have a hysterectomy when my daughter was only 2. My doc had to cut the 12 lb sucker in pieces just to pull it out. The hardest part for me was that after the operation I wasn’t allowed to lift my daughter up. I wanted to carry this little thing around so badly that after the first 6 weeks I started to probably over due things a bit, and yes it hurt, but at the same time it helped “me” to heal. Find what helps you to heal. And don’t accept this sickness to be the end of being you, or it will win. Turn your life around, it is possible! |
| Ronda Lynn | I was Diagnosed with Fibromyalgia in 2007 after 2 yrs of struggling to figure out why I was getting so sick and why I was so sore & tired, they found a 5 lb Tumor(non cancer lost ovaries). I spent almost a year just laying in bed with my laptop the pain all over my body never went away, They discovered Hyper nerve sensitivity, non stop ringing in my ears, I feel like i’m holding onto an electric fence. I became so depressed, meds they gave me made me gain 75lbs, I hate mirrors or windows. my husband & 4 sons Tried to understand, but things soon got worse, eating made me so sick & caused so much pain, 2015 they discovered 2 golfball sized stones in my gallbladder & it was very swollen and needed to be removed asap. so since March I have been trying to get back on my feet, my sons are all above 18yrs old now, but somehow they resent me getting sick. being in so much pain I can’t do simple thing like doing dishes or laundry, so they do their own. 3 sons still live at home, * Stress is big time problem & some how I am being blamed for ruining all their lives since I got fibro, all the depression meds & pain meds I take to try and be the Best Mom I could be for them isn’t enough. They are mad at me & I feel so alone and so lost. I have lost all my church friends, because I can’t go out much last 3 years. Family hasn’t been supportive & doesn’t involve me in gatherings & stuff, Why do everyone I love with all my heart hate me. I didn’t choose this, it just happened. I gave up my 3 horses, I have purged my clothing and collectives, I am even giving up my dogs, & now gave in to moving to town from a country home I have lived in for 22 years. I have lost everything I treasured & loved. Why? What can I do to get better? |
| MirandaRSmith | a) What have been your main symptoms of fibromyalgia over the last twelve months?
Painful pins and needles sensation in arms and legs, tiredness, going from talking normally to forgetting how to make a simple sentence. Pain in shoulders, neck and lower back. Hot and Cold waves including sweating profusely. Headaches that feel like someone is shoving a needle through the back of my eyeball, not being able to stand, sit, walk or lie down comfortably or for long periods of time, constipation, nausea and finally needing the loo constantly. b) How have each of these symptoms changed over this time? Are any of the symptoms new? None of my symptoms are new but this year the pain has significantly and the ability to cope with the pain has defiantly been worse. I have had to cancel more and more plans and its very rare to go through a day without 1 nap if not 2. However, sometimes after a nap I am in more pain than before and even more tired than I was. c) Have you changed your therapy for fibromyalgia? Due to the fact I have been at my wits end I have joined the Fibromyalgia action group for support and help to manage my condition. All my painkillers are the same and my doctor wont even see me any more as repeat prescriptions are to be handed in at reception and you are forbidden to ask to see a doctor if you are just there for repeat medication or consultation for the same illness as its a waste of valuable doctors time. d) Have you made any lifestyle changes? How have these impacted on your fibro? In Feburary my permitted work ended this meant I no longer had a reason to leave the house and over time my arms and legs have weakened as they were not getting the regular exercise I was getting and making it harder to do my back exercises as a result my health has deteriorated. e) What is your support network like? I am a member of Fibromyalgia action group and although have only had my first meeting last month they seam nice. My family after years of treating me like I was faking being ill are now being supportive because they a friend with Fibromyalgia and are starting to understand the illness because of her. My new boyfriend is a rock he is supportive and through the worst of times goes out his way to make each day special to make me happy. f) On balance are you positive about your future with fibro? I am really not the painkillers I am on barely touch the pain my doctors don’t want to know and often say what do you wan me to do about it and my health is generally getting worse. The last few months have been so bad at times its hard to keep going. What is worse is that I feel like I have no options and no idea of what I can do to prevent or lessen flare ups. |
| LokiShine | a) What have been your main symptoms of fibromyalgia over the last twelve months? Pain mostly. Kind of a cop out answer but it’s true my pain killer is at its highest level I’ve been on. The weirdest most problematic pain is one that starts under my shoulder blade, then becomes the pain you get when you hit your funny bone… But for 20 odd hours a go. b) How have each of these symptoms changed over this time? Are any of the symptoms new? Pain isn’t new, just the intensity. The funny bone pain is around a year or so old now. My joints have gotten worse and if I lie on my back for more than 2 minutes I get crippling pain in my lower back that makes it so I can’t move. If I lie on 1 hip for too long it becomes agony, even in my sleep my partner wakes up several times to encourage sleeping me to flip over. Some days the duvet on my legs is agony. c) Have you changed your therapy for fibromyalgia? At the moment my doctors seem to have lost interest. I’ve dragged myself in crying in agony. Unable to get around the house. Let alone to shops or have anything close to a life. I just have pain killers at the moment as I’m watching myself get worse each day. d) Have you made any lifestyle changes? How have these impacted on your fibro? Some times the pain excersies I half manage are. The most I can do for a day. A bath is an excursion that takes planning and is exhausting. I need help with the simplistic of tasks. I wish I could just “acceptx” the pain like my doctors say but it’s the kind of pain I can’t ignore, it demands to be felt. e) What is your support network like? I have 2 partners who care for me and help me. Medical professionals don’t seem interested, I’m too awkward for them I guess. f) On balance are you positive about your future with fibro? No. I’ve attempted suicide 2 times but apparently I’m quite tolerant to medication. Im in a better place now but the pain is still getting worse. It. Doesn’t. Go away and there isn’t.much life for it left to take from me. |
| Ponder57 | My fibro has gotten worse over the past years even though I was told it would never progress. The overall pain is worse. I have developed more symptoms such as dizziness, buzzing in my head, double vision, osteoarthritis, tingling feet, worsening headaches, and complete shutdown of my bowels. I have had hearing and vision tests and been tested for vertigo. I’ve had a brain MRI and various xrays. I am about to have a Celiacs test. I have had a CT scan of my bowels. My medications have been increased and I have new ones. |
| smvmcauntiesuz | A) My main sx have been pain, gastric distress, and fatigue. B) My sx have worsened over the last 12 months. C) I moved, and have had no medical care over the last year, due to medical coverage issues. D) I have taken steps to reduce stress, and if I have seen improvement in edema. E) I have support in my husband and a few close friends, and foremost, I have GOD. F) If I can get and keep consistent medical care, I have hope for the future of my fibromyalgia. |
As mean as it sounds…pull yourself out of this depression!
I was lucky enough and found a good doctor. The doctor I had seen diagnosed me with Fibro and handed me a 10 page printout, “here you go, read up on it”. That was her understanding of help. Then I found a doctor who actually understood what I’m going through, and he gave me pain medication. He send me to a pain clinic, but when the pain was under control I saw him again. He manages all my medications now.
There are some who don’t understand dependency and addiction. My body depends on the pain medication, but not my mind. Once my pain was under control I picked up my life and I continued to live it instead of throwing it away. I lost over 100 lbs, I had another baby, we adopted a second puppy, and last year we moved to a bigger house with a huge yard.
I learned that giving in to this sickness is your death. You might still be breathing, but on the inside you are dead. I was dead. Now I make sure I manage my medication, and try to live healthy, and just act like the sickness does not exist. I picked up my dreams, and decided that I wanted to live those dreams!
Sure I have bad days too, but I learned to deal with them. I take hot baths in a bathtub that my plumber put in, but I did all the tile work. I have to say, hubby doesn’t like physical work, so I do most men’s jobs around the house myself. Staying active is the secret!!
I caught a pretty nasty bug over Thanksgiving and have been in bed for a week now. I got up today and saw a doctor to get rid of the secondary bacterial infection I have now. Getting out of bed was the hardest thing I have ever done! But I know it will hurt like this only a few days, and then I’m back to my “normal”, which for sure isn’t the norm. I give myself time when I do my daily work. I gave myself over 6 months to tile my bathroom, but I got it done.
My house isn’t spotless, and my kids get pizza at least once a week, but doing things myself, getting the job done gives me a high that powers my life 😉
Last year alone I had my very first garden, and grew my own vegetables in garden boxes that I designed and build together with hubby. I was the one who put a wood floor in hubby’s office, and tiled my new bathroom. I took the car apart after the shop wanted $1000 + for a new AC compressor and fixed the problem myself for about $220, but that included the tools I had to buy. I took the carburetor on our lawnmower apart and boiled it. Now it runs like new again. I learned how to give my dog the necessary shots to make her feel better. I started preparing the dog food from scratch since one of my 2 dogs has bad allergies. I taught my daughter to not be afraid of riding a bike, and I taught my son how to drive a car. The list goes on and on, but only because I decided not to give up.
I hope you understand that your family might never understand the pain you endure every day, all they see is that you gave up! They don’t hate you. They don’t tell you all the hurtful things because they hate you, they treat you this way because they love you, and it hurts them to see that you simply gave up. A part of them unconsciously thinks that you don’t love them, or you wouldn’t just give up!
My advice to you is to decide what you want, and then go and get it!
Find a doctor that will help you control the pain. It will hurt like hell in the beginning, but after a while you will actually have less pain if you work out every day. When the pain hits start stretching those body parts first. Get a muscle relaxer that works for you. Go on walks. Set goals of cooking something really good once a week, and then twice. Plant a garden. There is nothing that gives you more hope than watching your own achievements grow. Just don’t give in!
I had to have a hysterectomy when my daughter was only 2. My doc had to cut the 12 lb sucker in pieces just to pull it out. The hardest part for me was that after the operation I wasn’t allowed to lift my daughter up. I wanted to carry this little thing around so badly that after the first 6 weeks I started to probably over due things a bit, and yes it hurt, but at the same time it helped “me” to heal.
Find what helps you to heal. And don’t accept this sickness to be the end of being you, or it will win. Turn your life around, it is possible!
I was Diagnosed with Fibromyalgia in 2007 after 2 yrs of struggling to figure out why I was getting so sick and why I was so sore & tired, they found a 5 lb Tumor(non cancer lost ovaries). I spent almost a year just laying in bed with my laptop the pain all over my body never went away, They discovered Hyper nerve sensitivity, non stop ringing in my ears, I feel like i’m holding onto an electric fence. I became so depressed, meds they gave me made me gain 75lbs, I hate mirrors or windows.
my husband & 4 sons Tried to understand, but things soon got worse, eating made me so sick & caused so much pain, 2015 they discovered 2 golfball sized stones in my gallbladder & it was very swollen and needed to be removed asap.
so since March I have been trying to get back on my feet, my sons are all above 18yrs old now, but somehow they resent me getting sick. being in so much pain I can’t do simple thing like doing dishes or laundry, so they do their own. 3 sons still live at home,
* Stress is big time problem & some how I am being blamed for ruining all their lives since I got fibro, all the depression meds & pain meds I take to try and be the Best Mom I could be for them isn’t enough.
They are mad at me & I feel so alone and so lost. I have lost all my church friends, because I can’t go out much last 3 years.
Family hasn’t been supportive & doesn’t involve me in gatherings & stuff, Why do everyone I love with all my heart hate me. I didn’t choose this, it just happened. I gave up my 3 horses, I have purged my clothing and collectives, I am even giving up my dogs, & now gave in to moving to town from a country home I have lived in for 22 years. I have lost everything I treasured & loved. Why? What can I do to get better?
a) What have been your main symptoms of fibromyalgia over the last twelve months?
Painful pins and needles sensation in arms and legs, tiredness, going from talking normally to forgetting how to make a simple sentence. Pain in shoulders, neck and lower back. Hot and Cold waves including sweating profusely. Headaches that feel like someone is shoving a needle through the back of my eyeball, not being able to stand, sit, walk or lie down comfortably or for long periods of time, constipation, nausea and finally needing the loo constantly.
b) How have each of these symptoms changed over this time? Are any of the symptoms new?
None of my symptoms are new but this year the pain has significantly and the ability to cope with the pain has defiantly been worse. I have had to cancel more and more plans and its very rare to go through a day without 1 nap if not 2. However, sometimes after a nap I am in more pain than before and even more tired than I was.
c) Have you changed your therapy for fibromyalgia?
Due to the fact I have been at my wits end I have joined the Fibromyalgia action group for support and help to manage my condition. All my painkillers are the same and my doctor wont even see me any more as repeat prescriptions are to be handed in at reception and you are forbidden to ask to see a doctor if you are just there for repeat medication or consultation for the same illness as its a waste of valuable doctors time.
d) Have you made any lifestyle changes? How have these impacted on your fibro?
In Feburary my permitted work ended this meant I no longer had a reason to leave the house and over time my arms and legs have weakened as they were not getting the regular exercise I was getting and making it harder to do my back exercises as a result my health has deteriorated.
e) What is your support network like?
I am a member of Fibromyalgia action group and although have only had my first meeting last month they seam nice. My family after years of treating me like I was faking being ill are now being supportive because they a friend with Fibromyalgia and are starting to understand the illness because of her. My new boyfriend is a rock he is supportive and through the worst of times goes out his way to make each day special to make me happy.
f) On balance are you positive about your future with fibro?
I am really not the painkillers I am on barely touch the pain my doctors don’t want to know and often say what do you wan me to do about it and my health is generally getting worse. The last few months have been so bad at times its hard to keep going. What is worse is that I feel like I have no options and no idea of what I can do to prevent or lessen flare ups.
a) What have been your main symptoms of fibromyalgia over the last twelve months?
Pain mostly. Kind of a cop out answer but it’s true my pain killer is at its highest level I’ve been on. The weirdest most problematic pain is one that starts under my shoulder blade, then becomes the pain you get when you hit your funny bone… But for 20 odd hours a go.
b) How have each of these symptoms changed over this time? Are any of the symptoms new?
Pain isn’t new, just the intensity. The funny bone pain is around a year or so old now. My joints have gotten worse and if I lie on my back for more than 2 minutes I get crippling pain in my lower back that makes it so I can’t move. If I lie on 1 hip for too long it becomes agony, even in my sleep my partner wakes up several times to encourage sleeping me to flip over. Some days the duvet on my legs is agony.
c) Have you changed your therapy for fibromyalgia?
At the moment my doctors seem to have lost interest. I’ve dragged myself in crying in agony. Unable to get around the house. Let alone to shops or have anything close to a life. I just have pain killers at the moment as I’m watching myself get worse each day.
d) Have you made any lifestyle changes? How have these impacted on your fibro?
Some times the pain excersies I half manage are. The most I can do for a day. A bath is an excursion that takes planning and is exhausting. I need help with the simplistic of tasks. I wish I could just “acceptx” the pain like my doctors say but it’s the kind of pain I can’t ignore, it demands to be felt.
e) What is your support network like?
I have 2 partners who care for me and help me. Medical professionals don’t seem interested, I’m too awkward for them I guess.
f) On balance are you positive about your future with fibro?
No. I’ve attempted suicide 2 times but apparently I’m quite tolerant to medication. Im in a better place now but the pain is still getting worse. It. Doesn’t. Go away and there isn’t.much life for it left to take from me.
My fibro has gotten worse over the past years even though I was told it would never progress. The overall pain is worse. I have developed more symptoms such as dizziness, buzzing in my head, double vision, osteoarthritis, tingling feet, worsening headaches, and complete shutdown of my bowels. I have had hearing and vision tests and been tested for vertigo. I’ve had a brain MRI and various xrays. I am about to have a Celiacs test. I have had a CT scan of my bowels. My medications have been increased and I have new ones.
A) My main sx have been pain, gastric distress, and fatigue.
B) My sx have worsened over the last 12 months.
C) I moved, and have had no medical care over the last year, due to medical coverage issues.
D) I have taken steps to reduce stress, and if I have seen improvement in edema.
E) I have support in my husband and a few close friends, and foremost, I have GOD.
F) If I can get and keep consistent medical care, I have hope for the future of my fibromyalgia.