Fibromyalgia

thecelt

star-pants, have u ever tried amitriptyline, i have found that taking it helps me sleep better, i used to give the night having to twist and turn due to the pain in my hips etc before taking it.

littlebug

I started running a year and a half ago and now run 3-4 times a week and I'd say my energy levels are many multiples of what they used to be. I also sleep much much better. Rather than having one god nights sleep in a blue moon I now have 3-4 nights per week where I have a decent nights sleep. I know its not for everyone but really if I can do it anyone can.

star-pants

thecelt wrote: »

star-pants, have u ever tried amitriptyline, i have found that taking it helps me sleep better, i used to give the night having to twist and turn due to the pain in my hips etc before taking it.

That was one of the first drugs I tried. It did help me sleep, and eased the pain. But one of the rare side effects is a horrible rash (like chicken pox) and I got it. all over my chest/shoulders/back/neck. Horrible, took months to go away even after I'd stopped the meds. I seem to be one of those that gets the rare side effects. Tried Prozac & Lyrica too (not at the same time). Neither really helped/agreed so I came off them.

littlebug wrote: »

I started running a year and a half ago and now run 3-4 times a week and I'd say my energy levels are many multiples of what they used to be. I also sleep much much better. Rather than having one god nights sleep in a blue moon I now have 3-4 nights per week where I have a decent nights sleep. I know its not for everyone but really if I can do it anyone can.

I have tried before, but I find it so hard to breathe, and the impact on my knees can just be too much. I try little sprints with the dogs but that's about the best I can do. I'm glad it works for you though, the relief of sleeping must be brilliant

Chaz

thecelt wrote: »

star-pants, have u ever tried amitriptyline, i have found that taking it helps me sleep better, i used to give the night having to twist and turn due to the pain in my hips etc before taking it.

I have been on amitriptylene now for 2-3 years - helps a lot with the sleeping problems and allows your brain to rest too while sleeping.

thecelt

star-pants, that sucks about the amitriptyline, its the only thing so far that seems to help. My doctor seems to hope it might help it to go into remission.

star-pants

Fingers crossed for you thecelt - I hope it does help it go into remission. It did work for me whilst I was on it, but the side effect was not something you could ignore.

If something works for someone, stick with it, the resting alone will help your body heal itself. I think if people can make it manageable then it makes it all a lot easier. I know things seem better for me if I've gotten some good sleep.

opinion guy

George Orwell 1982 wrote: »

It seems to me this illness is just a symptom of depression. I suffer from depression but have all the symptoms of fibromyalgia as well. A real pain in the ass tbh.

Perhaps depression is a symptom of fibromyalgia ? Has it occured from you that perhaps you have fibromylgia if you have all the symptoms of it ?

Well actually to be honest I consider depression as a secondary effect of practically any long term disabling illness. I mean thats a normal reaction.

i-digress

Star-pants I know what you mean. My Mum also has RA and my Dad is hugely supportive. It's different when it's you though, you know? I'm on a walking stick a lot now, and while it improves my mobility I feel so old and unattractive with it. Which is ridiculous. It's hard accepting your limitations though, but I am getting better at it.

0lddog

Have any of you tried a diet high in salt for a week or two ?
( many people with POTS find it greatly eases their symptoms - http://www.boards.ie/vbulletin/showthread.php?t=2055878375 )

star-pants

i-digress, I'm lucky I don't need a stick myself, when I'm bad I just limp along.
Even my mother hates having to use a stick (and she really should a lot of the time).

It is different when it's you, but I guess because I saw her cope all this time I feel I should be able to cope, even when I can't. I don't like to let her know how much pain I'm in, or if I'm feeling very low because I don't want to add to her own stuff. It's why I'd keep a lot from my family to be honest.
I have been wearing my wrist splits a lot lately because of the summer job I have (computer type work) they're just in bits. But you get lots of 'what happened you??' and 'who've you been boxing', and you feel a bit of a spa going ''oh well... um I just have bad joints'' cuz it doesn't sound as bad as they seem to think it looks or something.
I don't really care what people think if I'm strapped up or whatever, but it's hard when you're trying to look nice but you just can't do without the splits or limp or something. But I try and just carry myself with confidence anyway and just brush off the 'omg are you ok' with a laugh and a shrug.

thecelt

anyone else find that temporarily upping amitriptyline dosage caused bad dreams?

i-digress

thecelt wrote: »

anyone else find that temporarily upping amitriptyline dosage caused bad dreams?

Oh my God, I never connected that before but I get awful nightmares on amitriptyline! That makes so much sense, I'm on 50mg.

thecelt

i only got them in the last few weeks since i upped from 25mg to 50mg,
hopefully they go away now that i am on lower dose again.
The doc doesnt think it shud cause them, but I think its def the cause!

i-digress

No, I think you're right! I came off them for a while and was nightmare free. I don't generally have nightmares, but these were so-scary-I'm-afraid-to-go-to-sleep dreams. Interesting.

Seve

Finished work on friday, so bad after the weeks work, straight home and to bed, suffering from Fibromyalgia for a few years now, just seem to be getting worse, Quality of life ZERO, after work its hard to do anything else,

star-pants

There is another thread here about fibro if you'd like a read.

I do empathise, having fibro myself. Energy levels are low but I don't get much sleep so that only compounds the situation. It's hard sometimes when you get in from work or whatever, you're tired & sore but there's more things to be done. I just try my best to grit my teeth & muster up the strength from somewhere to go walk the dogs or do some cleaning etc. Sometimes you have to force yourself to do things.

But regarding the fibro - are you on any medication for it? Do you take any supplements or do any exercises?

Seve

Yes. I try to do some work around house when I get home before I sit down, once I sit i am finished, feel better when i do something, but it is so hard to motivate myself, get so depressed, feel like I am always complainig so much so that when people ask how I am even if I am bad, I say I am grand, people just dont understand Fibromyalgia and effects, Medication, tried so many, My Doctor is very good and does his best to look out for new meds,

star-pants

There is some good information in the other thread, about different things people have tried to improve themselves. From exercising, to supplements, to certain diets.
I know it's hard, and I feel like I'm always complaining too, so sometimes I just try and shrug it off because you don't want to burden someone else with your plight.
I would keep going back to your doctor too, see if he can try anything else, any physiotherapy or something solutions.
Meds didn't work on me either so I'm without them. Don't have the best stomach these days so diet changes aren't really feasible for me but some people have found ways that do help.

Seve

checked out that thread, very good, thanks, my stomach, not great at moment either, the only thing i can face to eat at the moment are crackers or cold white toast, I hate being a burden, it has afffected my whole family, even my eating habits,

star-pants

Aye it's not always easy to try and avoid certain foods when you can only eat certain ones. You should try and supplement your diet if you're not taking in enough vitamins/minerals I would ask your Doctor what you should take to keep yourself boosted. Energy loss will be worse if your system is low, you're also more likely to pick up colds n things too.

It does affect your family, but they're your family & (most) will always be there for you no matter what. My eating habits have been gotten used to, my mother still tries to pick out things she thinks I might eat or might like. She now knows how I get when my stomachs unwell, so do the rest of the family.

Seve

Thank you for listening and your advice, I know my family will always be there and support and put up with me, I just feel I they need a break from me,

star-pants

I know you feel that way, and I'm sure a lot of my friends/family would like a break from me too (when I'm unwell) but deep down they don't mind, so don't feel like you shouldn't be around them.

Seve

Thanks, I know they are great, my partner is the best, understands when i cant do things, and also stops me when I try to do to much

star-pants

That's good, it can sometimes be harder to feel less of a burden with a partner, least I know that's how I feel. You're afraid of them being sick of you, or if you're not able to do something you feel like you're not as good as you could be. But having someone who understands (like your partner seems to) is great, means they'll be there for you and won't make you feel badly about anything.

I know my bf understands if I'm very tired/sick/sore etc, and he'll work around that, and always likes to make sure I'm ok. I really appreciate that because you can sometimes share more with your partner than with friends/family at times, and it's nice that they make you feel a bit more normal I guess.

samade

I know what you're going through I'm the very same. I'm 47 and have been suffering for 8-9 years. Took a while to get diagnosed. I know 2 others with it but they are women and I'd love to hear how other men are dealing with it.


Depression has really set in at the moment, finding every day so hard.
I've also lost interest in sex to the point that the wife thinks I'm having an affair, truth is I wouldn't be fit for an affair.

Don't know if its the fibro or depression thats put me off sex. Any have this problem? Its really getting to me.

I just don't know how to cope with this, retirement is too far off and have 3 boys, 1st going to college in 2 yrs time.

Anomic

Hey folks,

Just wondering if anyone had any side effects from Lyrica. Started it on Monday night, slept like the dead, and had difficulty waking up in the morning. When I eventually got out of bed , had trouble getting dressed , lost power in my hands. Head was really foggy and my coordination was all over the place, plus overwhelming lethargy. Fell asleep standing up at the bus stop , fell asleep at my desk at work and then later on in the day, fainted. Went home after that , but effects lasted till late last night , and really bad headache today after it. Wont be taking them again, but just curious if anyone else ever experienced anything like that.

Used to take Amitriptyline a few years ago, but again it made my head feel quite " foggy " , went cold turkey bou 2 years ago ,and have stayed away from meds , with the exeception of occasional pain killer since.

Recenty pain has become unbearable in my legs, have difficulty sleeping and getting thro the day at work. Anyone try anything different, taking some painkillers at the moment to take to edge off, but dont really want to be on them long term. Think its the humidity at the moment making it worse, but cant go on much longer with only 3/4 hours sleep at night and working full time.

Bad day today !! Would love to hear of anything thats working for anyone else. Getting desperate.:(

thecelt

It seems that the side effects of the meds out there are nearly worse than the condition itself!

Am back taking a lighter dose of amitriptyline, but now my bp is a bit high.
I looked it up, yeah amitriptyline can cause high blood pressure.

If you look at the amount of people worldwide that seem to have the symptoms of fibromyalgia, there should be more info available on how to treat it!

Am taking glucosamine and codliver oil at the mo, have found that glucosamine helped before, but that was back in the days when all of this wasnt so bad!

Seve

Hi samade
Good to hear from you, good to hear from another man,
all sounds Familar, sent you a personel message

star-pants

It's amazing how many side effects there are of lyrica & amitryptiline.
The Amitryptiline did help me sleep (conked me out! lol) and a bit of foggy but it eased the pain, but I was getting the horrendous rash you get.
I tend to be one of those people who gets side effects.
Prozac wasn't really much help either, just messed with my head mostly.
And I got the 'not with it' foggy ness, and falling asleep, weight gain and just didn't suit me (the lyrica).

I know my mother needs eye drops to combat the effects of lyrica, as it can cause retina issues.

I used to take glucosamine with Chondroitin as that was supposed to be better, because chondroitin helps with the tissues n fluid type stuff around the joints. I did find it helped for a good while, as in I'd notice if I went off it.

Anomic

thanks Star-pants, will do some research on chondroitin , never heard of it, but at this stage im willing to give anything a go. Very annoying all the same, I was managing without meds more or less for the last 2 years, and now im back to where I was bou 10 years ago. Very frustrating. Just hope it passes fairly soon.