Anyone not taking meds ?
Posted , 8 users are following.
Hi Everyone,
My name is Amanda and I am 45 years old
I am new to this group and have recently (June) been diagnosed with Fibromyalgia, although like many others on this site I think I think I have been suffering for years. I was always told I was suffering from depression, and that was causing my insomnia, which then caused my body to be tired and hurt...and had I thought about trying yoga and deep breathing !!!
After many blood tests and appointments and 16 / 18 tender points I was finally given a name for what was wrong with me !!
At first I was relieved to have this diagnosis and really believed that if I avoided stress and didn't over do things I would be back to semi normality... how wrong was I. I am finding the pain ,aches and fatigue disabling at any random time. I have no control over it at all lately! The insomnia is at an all time worst, sometimes no sleep at all and finaly fall asleep about 5 - 6 the following morning, and the slightest thing wakes me up again !. Fibro fog has also become a constant companion .
I don't know anyone else who has fibro and as hard as my family try to understand it, I know they dont really know just how bad I am feeling, so this site has been fantastic in learning about this awful condition.
I have been prescribed 10mgs of Amitriptiline with permission to find my ideal dose between 10mgs up to 20mgs (liquid form) by my doctor, but have been very nervous of taking it, but I think I am going to have to give it a try !
Anyone not taking any meds for fibro and doing well?
Any info on amitrptiline side effects and results would be appreciated !
Also any info on how you get your head around the fact you could feel like this forever would be so welcome..because right now I am struggling with that one
1 like, 25 replies
nikki1734 Amanda_Awake
Posted
I've been diagnosed for a year now, after suffering a shoulder injury 2 years ago. I was diagnosed with osteomylacia at the same time, and prescribed vitamin d supplements to help with that.
Unfortunately it seems like my body is against me, as I also suffer with some serious mental health conditions and a skin condition called Hidradenitis Supperativa. This causes a MASSIVE issue with any treatment for Fibromyalgia, as the HS treatment rules out a lot of the stronger painkillers (tramadol, naproxen,etc) and my mood stabilisers can't be taken with any anti inflammatories. So I just have to live with it. Fortunately, I was signed off work nearly 4 years ago, and have no children, so if I physically can't move or get out of bed then I don't have to.
I did try gluten free at the beginning of the year, which helped a lot with the fibromyalgia, but had an adverse effect on my HS.
I live my life just playing with the cards I've been dealt, and making a point of living my life to the full on the days that I physically can. My little way of sticking two fingers up at my broken body and proving to myself that I will not be beaten (at least not every day) x
Amanda_Awake nikki1734
Posted
So sorry to hear that you are suffering so much ! That all sounds awful and hats off to you for being so up beat about everything..that is a main thing I am picking up on through talking to people on this site..be positive and accepting. I am not there yet ..lol
I am also lucky that if I am feeling to painfull / stiff / fatigued and so on that my youngest is 15 ( and to be honest he likes to spend as little time as possible with his mum and dad ..lol) and can make himself something quick to eat until hubby comes in..so for that I am so grateful!!
Thanks for the info on the gluten free diet. I have read a lot about it helping fibro and I am considering trying it, what a shame you couldn't stick with it !! In what ways did it improve your fibro?
Take care
Amanda
victoria93835 Amanda_Awake
Posted
The bloods came back clear which I could of cried because I was dying and I kept been told there is nothing medical wrong with me. I started to believe it was all in my head. Then I suggested fibro and that's when I got my diagnoses (partial)
I have new symptoms every day I feel like a hyproconda my mother even calls me it.
No one understands it's a horrible Illness. I'm suffering from pains from the waste up EVERYDAY, my arms go dead just holding something for a few minutes even writing this my arms feel like I'm holding weights and iv only a phone in my hand.
I do sleep (as such) but some nights the pain is that bad it keeps me awake. Iv terrible dreams when i go for a nap during the day.
I'm on lyrica 50-125mg a day depending how bad the symptoms are. Since I have been put on them (since my chronic "flu") I haven't been bed ridden per se but i am a little better considering. Suppose we need to learn about our body's and learn copping skills. Iv bad anxiety and I'm a recovering addict so I was never normal but this just put the nail in my coffin. Can I cope with this to? I dono but there is nothing we can do only be positive and stay connected to people on this to help us along the way.
I'm here to support you along the way we are newbies to this so we can complain together. There is a light at the end of this tunnel and like everything else we will get there or at least accept it.
HUGS AND KISSES X
Amanda_Awake victoria93835
Posted
You sound so much like me. I also have a lot of trouble with my arms and struggle to hold a hair dryer or a mirror when I am putting make up on. Some days it hurts just to brush my hair..like I am holding up a ton weight. I also ache like chronic flu and for a couple of years before I was diagnosed I was always saying I am aching so bad I must be getting flu..but the "flu" never came and I was just constantly feeling this ache everywhere!
Fibro does make you feel like a hypocondric because you are always complaining about being ill. Since being diagnosed my anxiety has reduced and I think it is due to the fact I was worrying about every symptom (and with fibro there are so many to worry about) and worrying if you have something serious wrong with you and no-one is helping..infact no-one seems to even be listening to you anymore and then you know whats wrong and you calm down and can put so many worries down to fibro !
Thanks for the offer of support and I would love to help each other , since I dont know anyone with fibro I pour all my worries and woes onto my hubby and I feel he is getting a bit tired of hearing me now lol..although he is very supportive !
Keep in touch and fingers crossed we begin to understand just whay has hapened to us all !!!
Take care
Amanda
victoria93835 Amanda_Awake
Posted
My my partner is been supportive but I also think he is getting sick of listening to me because iv always something new wrong with me. I'm sick of listening to myself so I wouldn't blame him if he was.
I woke ok up feeling ok today I wasn't stiff and my eyes weren't sore so that's a good start to my day. I'm feeling positive that today is going to be a good day. I'll report back and let you know. I hope you have a good day xxx talk soon
alig39 Amanda_Awake
Posted
I also suffer the dreaded F. Before i was diagnosed i was tried on allsorts of pills to try and ease the mysterious aches and pains. After diagnosis my gp put me on Amitryptiline and i felt terrible on them. However like we all say we all reeact to different drugs in different ways. I have other health issues also. I have had depression for 22 years now and the Fibro has only made it worse. I also have a bad back. I had surgery on it in 2007 but it only made it worse. I take Tramadol and Paracetomol for pain. My gp has put me on Mirtazapine for the Fibro and at the start it helped but now it seems not so much. The lack of sleep is just unbearable. I dont fall aslehep until 6/7 most mornings and then it will be for a coupe of hours. I get really tired during the day and if i lie down to try and sleep my legs start kicking off so im up again. I too like you wander what my future will be like. I can feel this slowly getting worsee over time and there are some points were im just too emotional to deal with it that i just want to close my eyes forever. Its the mixtureof the pain, the lack of sleep and the depression all rolled into one that is just to overwhelming for us all. Just hope and pray that one day real soon a wonder drug will be invented (fog is kicking in, i couldnt think of the word invented). In the meantime we have to stay strong for each other. Always remember to ask for help even if just for a bit of company to get your mind off things. Practice what you preach Ali lol
Love and hugs to you Amanda and to everyone else too. xxx
Amanda_Awake alig39
Posted
The sleeping is such a pain isn't it...do you find you wake up at the slightest noise too... I also suffer with the restless legs .. last night I went to bed at 7 in the morning , just like you my legs started itching and twitching, but also my head felt like it had something crawling on it and my face kept feeling like I had walked into a spiders web..I am putting these extra things down to fibro as I don't have the energy to worry about anything new today ..lol
I know exactly how you feel.. my worry is that I have been diagnosed and changed lots of things in my life and I am worse than I was ...I am hoping this is a long flare and it will pass. I used to be able to go to a couple of shops before I started to feel the burning ache , stiffness and fatigue, but just before christmas I barely made it down one aisle and I was saying to my son ..my legs are so sore and I am so tired..we will have to go home after this shop ( he was fine about it because I had to make him come with me anyway!!), but this is happening more and more.
I know how you feel about being overwhelmed.. I remember when the doctor was treating me at first for depression and I had to fill in one of those questionaires..she said do you ever think about hurting yourself.. I said no I wouldnt do anything like that..but if you were to tell me I had something seriously wrong with me I wouldnt care !! She said thats not a nice way to live...I said tell me about it... thats why I am here ..even doctors don't undersatnd just how tiring and constant this condition is!
I do believe sharing moans and symptoms with everyone in this group will help me no end though !
Don't mention the fibro fog..I must have re typed this 5 times ..lo
Take care and feel free to let off steam in my direction any time !!
Amanda