Status
Not open for further replies.

dutchiepuppies

New member
Joined
Mar 27, 2015
Messages
5
Reason
DX FIBRO
Diagnosis
05/2013
Country
US
State
NC
I'm 27 and was diagnosed with fibromyalgia almost 2 years ago (after a couple years of seeing the doctor for pain). I have had serious side effects to savella, Lyrica, cymbalta, and neurontin/gabapentin caused seizures. I am starting to feel crazy at the thought that my whole life is going to be pain. I used to have long stretches between flare ups (month or several months) but now it is a couple times a month at minimum for several days each time. I work with Dutch Shepherds and have a 5 yr old daughter, I used to be a competitive athlete....now I have to be careful about how often I empty the dishwasher and half the time can't go up the stairs in my home. I have a high pain tolerance but this pain is so extreme, I have to find something that helps, or at least try something. I'm so tired of feeling trapped in my own body! I don't know anyone who has fibromyalgia and its hard for those around me to understand even though they are extremely supportive and helpful. I just feel at the end of my rope right now!

Anyone have anything they've found works for the pain? Or helps keep it away?
 
Welcome, your not alone in this. With your reactions to all the nerve blockers your only left with pain meds like me.

Please see my posts starting a log book and what is fibromyalgia.

Get the book right away. Get a treatment plan.
I hope you have a good pain mgt doctor. The gp won't prescribe you the strong meds. You need pain mgt for them. Good luck!
 
Tramadol and paracetamol, really helps.xxx
 
cmetryme: no one has mentioned a pain mgmt doctor to me before, are they typically the doctors who would handle fibro patients?
 
Welcome, your not alone in this. With your reactions to all the nerve blockers your only left with pain meds like me.

Please see my posts starting a log book and what is fibromyalgia.

Get the book right away. Get a treatment plan.
I hope you have a good pain mgt doctor. The gp won't prescribe you the strong meds. You need pain mgt for them. Good luck!

wait which posts do I look at and which book should i get? (I'm having a slow brain/foggy day)
 
thanks 1sweed. pain mgt doctors do treat Fibro patients in some cases. mostly a ruhmatologist or neurologist. in our case, we have been threw the meds for fibro and no other choice is left,but to go to pain mgt. there are only so many meds they try for fibro. you are having the worst reaction there is to them. so now they can only deal with the pain and try to give you some seizures. let us know how you are doing and keep reading the posts and learning.
 
I'm 27 and was diagnosed with fibromyalgia almost 2 years ago (after a couple years of seeing the doctor for pain). I have had serious side effects to savella, Lyrica, cymbalta, and neurontin/gabapentin caused seizures. I am starting to feel crazy at the thought that my whole life is going to be pain. I used to have long stretches between flare ups (month or several months) but now it is a couple times a month at minimum for several days each time. I work with Dutch Shepherds and have a 5 yr old daughter, I used to be a competitive athlete....now I have to be careful about how often I empty the dishwasher and half the time can't go up the stairs in my home. I have a high pain tolerance but this pain is so extreme, I have to find something that helps, or at least try something. I'm so tired of feeling trapped in my own body! I don't know anyone who has fibromyalgia and its hard for those around me to understand even though they are extremely supportive and helpful. I just feel at the end of my rope right now!

Anyone have anything they've found works for the pain? Or helps keep it away?
Hi
Sorry to hear about your pain and feelings of sadness.
Unfortunately I am in the same boat as you, I've only recently been told that I have this.
I too am going through the different meds and getting different side effects, but not as extreme as you.
Nothing they have given me has helped so far. At the moment I'm coming off of Pregabalin slowly.
Again like you it's hard to get on with every day life with the lack of sleep and continious pain, only another sufferer can understand that it feels like your whole body has been run over by a truck every day! People can only see what looks like a healthy person in front if them. It's very frustrating!
I have found that swimming helps with my stiffness and although I have to work through the pain and the lack of energy, it helps me feel like I'm trying, even if it takes me an age to do a couple of lengths. I then go into the jacuzzi and relax with the jets on my aches. I've been told that relaxation is important and I find that the warm water etc helps me to relax through the pain. I admit it makes me very tired for the rest of the day, but I feel I'm helping myself to keep fit and if I need to take a nap after it I deserve it!
The important thing is to remember your important and like me we have to learn to try to cope the best we can and as long as we don't over do it and try to do too much we get through another day!
As my daughter said, 'you can't give up mum because one day they will find a cure', and for our children we've got to keep going on waiting for that day!
My doctor has told me that they are trying very hard to find a cure, so fingers crossed!
Like most illnesses it's unkind, but knowing others are online and going through the same things and that your not alone is helpful.
I'm going through a very low emotional period myself at the moment and I know how hard it is to try to stay positive, but the best advise the doctors have given me is just to try to adjust by not overdoing things and take small regular breaks to relax.
Take care and hope this helps.
 
I was diagnosed with FM in 1999, but believe thyroid is so much of this FM issue. My story is long and I've said it before here, so I get tired of repeating. I've never taken the so called drugs designed for fibro and worked with all supps for fibro issues and ibuprofen and DGL for stomach protection. I don't think my body needs those toxic drugs, I've seen too much in my life on the damage from drugs, so steer clear. Just my 2cents....think about it.

Yes, do only what one has to do and forget about so much...it will be there if and when we can do things again.

There is a lot of body systems that need to be worked on as I see it over all these years. J
 
I too am after being diagnosed. I am 42 years of age. I get severe tiredness where I almost pass out. Lips turns blue, face goes off white and I just literally curl up in a ball on the couch. I feel so tired I can't even sit up cause I feel like my neck can't even hold my body up. I could be like this for a few hours or it could last for several days. I find it very frightening that my body feels so wasted and actually I feel like I'm dying. Last time I was on couch for two weeks before I started to come round. Received three iron infusions in hospital over a 6 week period. Had been feeling great for about 7 weeks up till 2 weeks ago when my lips turned slightly blue and I felt really cold. Immediately the fear came that I was going to pass out but I didn't. I had bloods done the previous week so had been feeling drained after that. Had been ok till yesterday when the outside of my lips went blue again. I sat down and tried not to think about it. I didn't get cold this time but again I have the fear I'm going to pass out as my blue lips are my warning sign. So this has happened when I've been driving! So haven't been out in my car on my own since Last November when all this really started. Dr. Reckons I have this up to 20 yrs maybe and that why my 18 year old twins were 11 weeks premature, why I had a late miscarriage 13 years ago, and why my 4 1/2 year old was 9 weeks prem. I am struggling with this diagnosis cause my husband DOESNT understand. I even had a check up with the Dr last Friday and my husband didn't ask how I got on! I am always a very active person, I love walking, cycling, running so finding this very hard. Also cause I can't even take my 4 year old daughter to the park cause I have the fear I'll pass out as the only warning sign are blue lips!. I know there still people worse than me but I suppose I have no support from my husband who doesn't understand and doesn't want to understand. I'm a poor eater so he blames that and doesn't want to hear of anything else. I take fortijuice which is a prescribed vitamin drink every day and placenol which is prescribed for the fm. I feel this medicine is working but I think I've done too much exercise recently which could be the cause of the blue lips after my bloods a few weeks ago. Just sick of it but I look at my 4 yr old so I know I've to keep going for her. I get pains in my muscles but not too bad. But my heart races a lot when my body's tired and since I nearly passed out last November while driving with my 4 yr old I've been getting severe panic attacks. So I live at the moment from hour to hour. Someone very close to me died recently of cancer so I just think of what they went through for 2 years and I tell myself to cop on and get on with it. But reading all the different information that everyone is putting up is definitely helping me.
 
Status
Not open for further replies.
Back
Top