I was just wondering about life quality.

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I was just wondering about life quality.

Post  pen on Tue Jan 19, 2010 3:30 pm

Another post made me think about this.
I have a very low quality of life now. I have FMS and IBS to go with the migraines.
Since September I have been having a lot of dizzy spells which really help... No

A lot of you seem to manage to go to work, and some seem to have something of a social life too.
Dont get me wrong, thats great, but I am obviously not winning. I would like some life, and less pain too.

Have emailed the neuro for another appointment, but he does only want me to try more prophylactiics it seems.
Getting back on to the osteopath clinic to see if they can address my trigger points.
GP pretty clueless.
Had food test and nothing came up red.
Drinking more water and would love to exercise more.
.
What have I forgotten?
I usually feel less pain by bedtime but start over again when the pain returns in the night.
Mornings are horrible. I wake in dreadful pain.
Thinking of trying a herbal sleeping pill, maybe sleep quality, but otherwise, out of ideas.
Cant go on like this, I spend almost every day sitting on the couch holding my head. Its not life...

Those that have improved their situation, can you suggest anything please?
Im serious, new year, big birthday year, not winning at all.
Not expecting anything from anyone, we are all struggling a lot I know, but maybe something you suggest might help another if not me.....

I am open to suggestions...any....
Please help if you can. I try to stay upbeat, but it is becoming very hard.
I cant see any future at all with this level of pain.

Thanks friends.
pen


sunny sunny

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life quality

Post  rileyoday on Tue Jan 19, 2010 3:53 pm

Pen, I had a life just as you described for 6 years. I had daily chronic headache / 4-5 M a week. No work friends family.

I had a new Dr. had seen 2 times . on the 3rd visit saw someone else in the clinic. I gave him a quick run down ,

he said try this script 3 x day might help. 75 days later I have only had 3 M and 4 headaches. I feel pretty good.

Your help could be out there soon. I had almost given up, never expected to get help that day but I did.

I take 100 mg 5-htp 2 x day and script clonodine .1mg 3 x day . The htp had helped last year with severity of M.

You know we are all diff but you may find relief soon, I hope so.

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Re: I was just wondering about life quality.

Post  pen on Tue Jan 19, 2010 4:26 pm

Thank you so much, you will appreciate having been in the situation, you have imparted a little bit of hope.
I am off to bed in a little while (its 1..30 here) with my head about a 5. In the morning it will be a 10 unless I am very lucky.
Then I will spend at least until about 2pm if I am lucky struggling through the pain and hoping something works.
You know how it is I am sure.
I dont know about your drug, but will check it out for sure.
Thank you, miracles do happen then.

Night.

Sleep

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Re: I was just wondering about life quality.

Post  Paradox on Tue Jan 19, 2010 4:48 pm

I try to have a social life but it has diminished rapidly. I don't make plans anymore because they often have to be cancelled. I only do "spur of the moment" things when I have a good day. My social life on a weekend usually involves watching football games with a friend on Sunday. I'll be sad when football season is over on the 7th.

But, I don't have FMS.

Charlotte
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Re: I was just wondering about life quality.

Post  Stillhurtin on Tue Jan 19, 2010 4:54 pm

Was the post my depressing reply to the poor girl who was looking for advice?? lol I felt really bad after that, like I was raining on her hope parade. I'm just in a funk cuz for me, the quality of MOST aspects of my life are severely suffering and I'm TIRED of it!! I'm struggling to make it through each day!

Sorry you are so fed up. I understand....
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Re: I was just wondering about life quality.

Post  pen on Tue Jan 19, 2010 5:12 pm

Stillhurtin wrote:Was the post my depressing reply to the poor girl who was looking for advice?? lol I felt really bad after that, like I was raining on her hope parade. I'm just in a funk cuz for me, the quality of MOST aspects of my life are severely suffering and I'm TIRED of it!! I'm struggling to make it through each day!

Sorry you are so fed up. I understand....

no really Jessica, it wasnt you.....we all get those moments I guess. I get really sensitive at times. But no, it wasnt you... Laughing

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Re: I was just wondering about life quality.

Post  marion on Tue Jan 19, 2010 5:43 pm

Pen like you I have many things happening at once. Last year was the worst and I knew I had to do something. The something has been to address just one thing at a time. So started on neck.

Off to pyhsio who is excellent and with my neck I have learnt I have a choice. If my neck is good, my cyatic (sic?) nerve plays up. Have chosen having a pain in the backside. So even though it means regular trips to physio to keep the neck good, and the physical pain in the lower back is worse than the neck, my headaches decrease and I think clearer.

Next tackled sinus infection - slowly getting there but will need more antibiotics or something. and on it goes.

By lessening the evils I am back functioning quite well. So see if you can just improve just one thing no matter how small. Sometimes even getting rid of some itching dry skin makes you feel better,

I am finding that failing to get some exercise has more negative effects than slipping on diet. So even if it's just walking to the letter box, try and get out of the house, not just for your body but for your mind too.
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Re: I was just wondering about life quality.

Post  tecky on Tue Jan 19, 2010 7:03 pm

Pen,

I think I'm in a similar situation as you. No life. Pain up and down like a roller-coaster. Always changing, tweaking, starting, stoppping, etc. meds--it's so hard on one's body physically and emotionally.

Just wanted you to know you're not alone. Hang in there and keep searching for hope.

Take care,

Becky
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Re: I was just wondering about life quality.

Post  pen on Wed Jan 20, 2010 5:10 am

I have been at 10 since 7am. Its noon and I can't take any more. I will hate myself and take Triptan.
If ONLY I knew the cause, I would address it... But I have NO idea. NONE.
Sorry negative. So bad.

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Re: I was just wondering about life quality.

Post  pen on Wed Jan 20, 2010 6:53 am

marion wrote:Pen like you I have many things happening at once. Last year was the worst and I knew I had to do something. The something has been to address just one thing at a time. So started on neck.
Off to pyhsio who is excellent and with my neck I have learnt I have a choice. If my neck is good, my cyatic (sic?) nerve plays up. Have chosen having a pain in the backside. So even though it means regular trips to physio to keep the neck good, and the physical pain in the lower back is worse than the neck, my headaches decrease and I think clearer.
Next tackled sinus infection - slowly getting there but will need more antibiotics or something. and on it goes.
By lessening the evils I am back functioning quite well. So see if you can just improve just one thing no matter how small. Sometimes even getting rid of some itching dry skin makes you feel better,
I am finding that failing to get some exercise has more negative effects than slipping on diet. So even if it's just walking to the letter box, try and get out of the house, not just for your body but for your mind too.

Marion this is sensible and something I have tried before but to no avail. Nothing seems to make any difference. I do feel I have two pains and my neck and sinus are big in all this. But despite osteopath etc, still no relief. I am now not functioning at all.
Something went wrong Sept 2009. Since then gradual worsening of everything. Since October, everything has gone and I am now housebound and pretty much couch bound, and out of ideas.
I really applaud your effort, I just wish it would work for me.
Hope it continues for you.
Pen

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Re: I was just wondering about life quality.

Post  pen on Wed Jan 20, 2010 6:55 am

Stillhurtin wrote:Was the post my depressing reply to the poor girl who was looking for advice?? lol I felt really bad after that, like I was raining on her hope parade. I'm just in a funk cuz for me, the quality of MOST aspects of my life are severely suffering and I'm TIRED of it!! I'm struggling to make it through each day!
Sorry you are so fed up. I understand....

Jessica, Hugs.

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Re: I was just wondering about life quality.

Post  pen on Wed Jan 20, 2010 6:56 am

tecky wrote:Pen,
I think I'm in a similar situation as you. No life. Pain up and down like a roller-coaster. Always changing, tweaking, starting, stoppping, etc. meds--it's so hard on one's body physically and emotionally.
Just wanted you to know you're not alone. Hang in there and keep searching for hope.
Take care,
Becky

Becky I know you are there too. I just feel like screaming out, "For Gods sake somebody help me", I dont know how to do it any more.
Hugs.

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Re: I was just wondering about life quality.

Post  tecky on Wed Jan 20, 2010 8:06 am

I hope today is a better day for you, Pen. I'm thinking of you.

Becky I love you
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Re: I was just wondering about life quality.

Post  pen on Wed Jan 20, 2010 8:34 am

tecky wrote:I hope today is a better day for you, Pen. I'm thinking of you.
Becky I love you

Sadly not Becky, another Triptan eased it some. 3 hours to work and another 3 of side effects so not the answer.
I hope it is better for you.
silent

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Re: I was just wondering about life quality.

Post  Ivy on Wed Jan 20, 2010 9:02 am

Pen,
I am very sorry to hear about your pain and about your sorrow. I know what it feels like and you have all my sympathy.

I have my personal way to break those horrible cycles of almost daily migraine.
I stop abortives like triptans cold turkey and bear the pain for days.
I find help in ice packs and aspirine/tylenol.
After a week of hell, I feel better and I can stop the cycle.
It is horrible to stay sick in bed for days and the temptation to give up is strong, but I'm stronger....

Take care
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Re: I was just wondering about life quality.

Post  pen on Wed Jan 20, 2010 9:11 am

Ivy thank you.
Sadly I just cant do it. I cannot bear the pain. I mean I do, often, but when its 12/10 I have to take the Triptan.
I can go 5/6/7/8 days taking nothing, and then start another 14 day run of non stop pain.
I wish I was as strong as you, but I have family begging me to take them because of the agony and their own inability to help me. I need to be stronger I guess. Glad it helps you though.
p

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Re: I was just wondering about life quality.

Post  alli on Wed Jan 20, 2010 9:49 am

I'm right there with you. I have TN, FMS, and IBS along with migraines. I have no social life anymore. I've been trying for 4 days to go see Avatar with my daughter and I haven't made it yet. I get so tired that every day, without fail, I have to take a 2-3 hour nap. And I am in some sort of pain 24/7, usually several different places at the same time.

I only do things at the spur of the moment as I never know if I will feel well enough to go out. Even family trips have a built in rest day for me so I can vege and recoup before the next family event. I work, sleep and occasionally get my house clean. Smile

I have learned to just take things as I can. When I can do something, I do it, otherwise I don't stress on it. I read alot and watch a lot of movies and TV. Do my crosswords to keep what is left of my brain sharp. Razz

But I hope that at some point things will get better. Meds will help more, my body will improve., but if not, I've read a lot of really entertaining books along the way.
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pennie

Post  dcook60 on Wed Jan 20, 2010 10:08 am

you are as strong as anyone here. you would be able to get thru life much better if you could take more triptans, right? i know you've said you are very limited by your drug program. sometimes you may need more than one in a day. that's ok, as long as you have a good supply, which you probably don't.

since you can't take them daily (or at least as often as you need them) here's another idea which you may have discussed earlier. (sorry, 70-yr old brain doesn't remember everything these days).

you need something to help you sleep deeper. when i take my "magic pill", (NOT A NARCOTIC; THOSE MAKE ME VIOLENTLY SICK) i don't feel so terrible in the morning, and don't need a triptan that day.

herbal things may not be strong enough for you. i don't know what sleep things you've tried. write to me privately if you like. sleep is the KEY for me. i've had 5 overnight sleep studies, can't stand the drugs nor the breathing machines, but one drug is awesome for me. i can only take it twice/week, though.

keep on learning, here and everywhere. i pray something helps you soon. dianne
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Re: I was just wondering about life quality.

Post  pen on Wed Jan 20, 2010 10:37 am

Thank you Ali. You do sound a lot like me, except I am doomed to crap daytime TV cos my head wont let me read.
Dianne thanks so much. I do wonder about sleep quality esp. with the FMS.
Excuse brevity, not much today even from Triptan.

P


Last edited by pen on Sat Jan 23, 2010 4:29 pm; edited 1 time in total

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Re: I was just wondering about life quality.

Post  MaryAnneLive on Wed Jan 20, 2010 11:56 am

Pen,

I am so sorry for your pain. I understand. I have had pain for 8 years with no days off. I dropped out of college, lost most of my friends and couldn't hold a job. If it weren't for my amazing husband I don't know where I would be. I have tried all of the preventatives, hundreds of alternative cures, 7 neuros, 2 hospitalizations, hundreds of thousands of dollars later, no change.

Finally this summer I asked for a referral to a pain specialist. I have been on a narcotic pain patch for about six months. It is AMAZING how much better my life is. My pain is not gone, but it is much more tolerable. I still don't have a normal life, far from it. But I don't want to jump in front of on coming traffic. I see the light and can focus on the positive.

Have you ever been to a pain specialist? It might be time. I put it off for years because I thought if we could find the cause of my pain we could make it stop. I haven't stopped looking, but I have a little relief in the meantime. I would be happy to talk to you privately about meds and dosages. I know there are several other people on this board that have found some relief with long acting pain meds. I know they would be happy to help you too.

I wish you pain free moments and the strength to enjoy them.

love,

Mary Anne
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Re: I was just wondering about life quality.

Post  pen on Wed Jan 20, 2010 1:08 pm

Mary Anne, thank you. I am so pleased you are getting some relief.
Very happy to hear from you and anyone.
My email is on the site and you can PM me too.
Thanks so much and hope it lasts for you.

Pen

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Quality of life

Post  dizzyflower on Thu Jan 21, 2010 6:10 am

Dear Pen

Sorry to hear it is so bad at the moment.

The neck issue sounds familiar, I have spent a fortune on Chiropractic treatment in the past to try to solve mine.

Eventually a physio gave me a ridiculous looking exercise that seems too simple to work but it really helps me and after I seem to breathe better. I only got it because I went to minor injuries because I trapped something in my shoulder and couldn't move my arm when lifting something and was convinced with the pain that I'd broken something. I just happened to mention it. I gues we never know where or how close we are to an answer, which is what I take heart in.

Probably only in the middle of December I was feeling that nothing was working, that nobody was even searching for an answer and that quality of life was rubbish, but somehow I can't help thinking that something is round the corner.

I really hope that things get better for you soon. Feel free to email or contact me if I can help.

Best wishes

Di

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Re: I was just wondering about life quality.

Post  Kate on Thu Jan 21, 2010 9:16 am

My life is not what it use to be. It pretty much sucks right now. I use to be able to hike all day,etc. I have to be careful of overdoing it or I will get a monster of a migraine. Even the lower grade migraines keep you from doing anything fun for a long period of time. So right now I just try and make the best of it. That`s all you can do.

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A 7 hour break

Post  pen on Thu Jan 21, 2010 2:57 pm

I just wanted to say I woke with about a 4 for the first time in 13 days. I was figuring I would get a break about 14 days because I am on some weird cycle.

I actually went out this afternoon. My husband and I went to Ikea. I felt I could cope. No medication. By the time we got there (30 mins) I had about an 8 up right side of my head, bad in neck. I did back off after about an hour (it can do this sometimes) and we went to pick up some groceries. I was fine for the next hour.

Got back in the car and within 10 minutes it was back.
This time it didnt back off. I have only just after IHM from my daughter and giving in to some pain killers, got it down to a 6.
It must be the bumping around in the car. It has occurred so many times. Depressing. I finally get a chance to go out and end up back where I started. Dont know what to do, the roads here are so bumpy, even the highways.

Anyway, just wanted to report a tiny victory.....

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Re: I was just wondering about life quality.

Post  pen on Sat Jan 23, 2010 4:33 pm

Well the one day outing was just that. Friday I limped through somehow and took no meds.
My daughter gave me two IHM. They helped, but went to bed after forced myself to walk dog for 15 minutes.
lousy night (no) sleep, and today succumbed to another Triptan. Just couldnt go through it all again.

Never mind, tomorrow is another day, but it isnt life is it??

Hope you all did better. Spring isnt far away (I hope)

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