Keep feeling as if my time is up

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Keep feeling as if my time is up

Postby Kwerkee » Sun Oct 20, 2013 8:43 pm

Sorry to sound so dramatic, but with how much pain I'm in daily I really can't see this ending well and every morning I wake up it feels as if its a miracle.

I cannot seem to do anything like a short walk, bit of housework and the list goes on without feeling ridiculously tired and even more aching.

I'm still new to what fibro is you see and my GP won't give me stronger painkillers >< she says because I'm only 25 and also, I have bowel issues (suspected IBD) and it could potentially make that worse and to try alternative therapies. I'm currently on a waiting list for 'Bowen' but it feels like too long :(.Here are a list of all my symptoms. Is this normal for fibro?

Fatigue - Massively so, my iron count is quite low and I do have have an underactive thyroid but it has never made me feel this tired! I'm sleeping much more (even if do wake up randomly during the night). Everything feels such an effort and I can fall asleep much quicker than I've previously done.

Chest pain - CONSTANTLY. Sometimes feel as if have to take a big deep breath and it does feel really quite scary. It can be really painful at times and I'm forever worried of a heart issue, even though bpm is fine. Sometimes it feels as if my heart is popping too?

Aching all over - Feels as if my muscles have been ripped? And not in the cool gym bunny way either lol.

Confusion - Things don't seem to sink in quite as much as they used to and sometimes when people talk, I miss words? Don't mean to but I seem to space out.

Blurry eyes

Loss of balance sometimes

Sinus issues - Recently for the last month I keep having full on congestion every other day!? Where I can't smell/taste. I seem to be forever blowing my nose :(.

Digestive issues - TBF the Drs think it is IBD as sorry if TMI, but there is blood and muscous. Along with massive bloating, abdominal pain, sudden bouts of diarrhea and the like :oops:

Headaches.

Really cold hands and feet.

Random pains? I.e. recently I've been getting pains near my groin/lower abdominal on both left and right side?

Am I just being a big baby and all of this normal? I'm seeing my GP again tomorrow, however, have a feeling as if going to have the same conversation as normal regarding painkillers. Sorrry, if this is inappropriate too, but I do seriously wonder how I'm still alive some days as every day, hour and minute is painful and feel as if wasting away :(
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Re: Keep feeling as if my time is up

Postby gems87 » Sun Oct 20, 2013 9:23 pm

hi

sorry to hear your feeling so low and unwell and the mo. Im 26 and i often wonder aswell will i ever get a break, Ive had surgery for scoliosis aswell and its since then in the year 2000 i have never been the same.

Some points you have listed that i have the same as

Fatigue -
have have an underactive thyroid
I'm sleeping much more
my legs dont feel my own
i often get a pain under my left breast and was told its costochrondritis
Aching all over
im getting really forgetfull like i cant remember peoples names etc
Loss of balance
I have a severe case of ibs aswell
Headaches.

your lower abdominal on both left and right side, this maybe an issue to do with your bowel

i know exactly how you feel and i think its alot worse when we are so young

take care
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Re: Keep feeling as if my time is up

Postby Johafa » Sun Oct 20, 2013 10:00 pm

Hello,
I totally understand how you feel. I think it's time to ask your doctor for anti-depressant if you're not on them already. I feel the same way as you most mornings, some mornings are worst than others. I actually feel disappointed when I wake up. I've mentioned that to my GP and she's increased my medication including my anti-depressant. Mention to your GP about the pains you have in your groin as it could be irritable bowel syndrome, very common with FM sufferers I'm told.

Don't give up. If you're able to, join aqua running. It's a good form of exercise that is recommended for us as there's no impact. I go once a week and I love it even though I'm totally knackered afterwards but it's for a good reason. Another thing that is good for your balance/dizziness is a group called staying steady. They give us exercises to regain our balance and confidence. If you can find that in your area, they are very good. I have everything you've listed plus noise intolerence, etc. I've was diagnosed with FM about a year ago and I never thought in a million year that I'd be able to do some type of exercises but I am and I'm over 50 years old. You have to remain positive and think that life is worth living and you'll make it.

Good luck and gentle hug to you
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Re: Keep feeling as if my time is up

Postby Damo78 » Sun Oct 20, 2013 10:28 pm

Hello,

I'm obviously sorry to hear you are going through this as I wouldn't wish this upon anyone.
I am though glad you posted as I suffer all of what you put down especially the chest pains in the last 2 months.

I also feel that it might be worth asking your Dr about antidepressants as I do believe they could be of benefit. I was put on medication called Cymbalta 60mg (Duloxetine) which worked both as pain relief and an antidepressant. It helped with my pain but sadly gave me bad anxiety and more panic attacks than usual. I am now on Lyrica, Sertraline and tramadol. However I still get very down due to all the pain and probably a little self pity.

I also feel that everyday is like groundhog day. I get up (in pain) do the breakfast for my children and get them ready for school. Wash the small bit of washing up from breakfast, then I am shattered again. I try and motivate myself to get ready for the day but sometimes the pain and tiredness is too much. Then the children are back from school by this point I've already started to have my flare up again and I know that is it until I fall to sleep in pain and start the whole cycle again the next day. I always ask WHY? I'm only 35, I have a young family and I can't do nothing with them because of the pain I'm in. I've become more irritable since being diagnosed and it breaks my heart that my children have to suffer along with me.

I wish you all the best and pray that yours and everyone else's pain may at least be eased. :-D
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Re: Keep feeling as if my time is up

Postby JYB » Sun Oct 20, 2013 10:39 pm

You are in a difficult position having all that pain and all those symptoms. Try to think about what happens when you go to see your GP. If you try to address all your symptoms in one appointment then a GP can't possibly do that and you will not have a successful appointment. If you can concentrate on one maybe two of your problems at one appointment then you may have a more productive appointment.
Write a list of all your symptoms then decide which are causing you the most pain/distress. Deal with those at tomorrow's appointment, then make another appointment and work your way through the list. It may not work out to be so logical as some problems may suddenly become more of an issue, but it's good to try this way. GP's are only human and can be overwhelmed if confronted with multiple issues.
Doing this while you are so ill is very difficult. Do you have a friend or relative who can go with you to the appointment? If not then contact the PALS dept at your local hospital and they may have an advocate who could help you. This would also help as you say you are having difficulty remembering things. Ask for information I writing then you can read through it afterwards.
I am thinking of trying the Bowen therapy as well, it's just the cost!
Hang on in there because you have a long life ahead of you. Things will improve and you will find a way to live with this, you just have to find the path and it may not be easy.
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Re: Keep feeling as if my time is up

Postby painprincess1 » Mon Oct 21, 2013 9:33 am

Hi sugar, sorry to here your going through a rough patch, sounds to me your having what we call a flare. ie really rough time were fibro gets it teeth in and beat you up for a well. that can be days weeks months .you like me and many ppl here seem to get worse for a good few months not long after finding out what we have.also things change from one day to the next , atm i have very sore skin like u get when u have flu.on top of all the aches and pain i already have lol.as for your ibd i take it that ibs to me.well most of us have that and we all have pain killers so id tell your dr u need them and u want some.sometimes u need to be alittle stronger in the drs. best thing for ibs i found is fibrogel u can buy it yourself if dr don't give it its only bran but it holds everything together and helps u go to the loo normal. ppl tend to think barn only makes u run its doesn't it can really help ibs. what your feeling is how most of us feel from time to time wondering if you can live like this , you can and you will.sometimes bloody mindedness and being sooooo mad at fibro is the one thing that does keep me going,i have 4 kiddies im 41 and im dammed if fibro is going to rob all my life.and even if the words come out but the pain beats me i just keep telling myself that. so chin up hun life anit over its just different.xxxx
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Re: Keep feeling as if my time is up

Postby fibro-lu » Mon Oct 21, 2013 3:11 pm

hi Kwerkee and :welcome:

now that you know that your iron count is low :coffee1: and your thyroid underactive :coffee2:
(both make tired and increase pain; and the combo makes it even more so)
could you not ask your GP to boost up those first?
:woot: :woot: :woot:

it is always good to write a list and take it with you :easter3:
but instead to try to talk through every symptom :nono:
focus on one and look at it from different angles :easter1:
all the best :cow-wave: Lu
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Re: Keep feeling as if my time is up

Postby Suzyhyde » Mon Oct 21, 2013 4:20 pm

Sorry to hear about all your pain so young !i tried Bowen treatment for a few months I am no different still pain ,I am trying acuputure at moment not to sure if that's doing anything I keep trying anything that's out there.it drives me crazy that nobody can cure me i hope it appeared one day so it might disappear keeping fingers crossed.my pain is back like having nagging toothache 24 hours ,my shoulders sore feel inflamed ,my legs are fizzing all the time feet cold and numb ,my elbows sore.so I am not suffering as much as you and mine started at 53 so when I read the forums I feel I could be much worse.i do take 600mg pregabalin also in evening amitrityline 20mg which are supposed to relax muscles also make me very sleepy once I hit my pillow with my heated blanket I sleep 8 hours so getting your medication right will improve things I hope.by the way the Bowen treatment was pain free it was like therapy to have somebody for a hour who would listen and try to help ,so unlike doctors if you are lucky give you five minutes then say they don't know how to help .the only reason I got my meds from my neuroligist .I wish you lots of luck in sorting thing out .
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Re: Keep feeling as if my time is up

Postby FluppyPuffy » Mon Oct 21, 2013 4:37 pm

Sorry to hear how things are for you at the moment Kwerkee :grouphug: :grouphug: :grouphug: Being in pain daily is draining, and not being able to get some relief does make you start heading a bit further down into the abyss.

Even tho you have suspected IBD, there should still be something your GP can give you to help make you feel a little more comfortable :-? :-? Is there a different GP you could see for another opinion about pain relief in relation to what else it is thought that could be affecting you??? Age shouldn't be a factor in deciding if you can have pain relief, the amount of pain you're in should be considered against the possibilities of interactions, issues it could cause with other (potential) conditions etc. You could consider talking to a pharmacist about what can be bought otc that could help, if suitable, as there are stronger things available than paracetamol, ibuprofen etc.

The various things you've mentioned can all be attributed to FM, and how you're thinking and feeling at the moment could well be adding it's effects to the mix, ramping everything up by a number of levels to what you usually experience.

Bowen Therapy is an unusual treatment to be on a waiting list for :-? :-? :-? Is this being accessed via your GP or are the sessions thru a private therapist??? It's something that has been mentioned on here a few times, and always brings with it a very mixed response, with some finding it absolutely wonderful, whilst for others it isn't anywhere near as helpful, if at all.

The advice about writing things down and putting them in an order of priority is sensible and sound, and is something a lot of us not only suggest, but do ourselves. You could also see if it is possible to book a double length appt to give a little longer to discuss things in more detail.
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Re: Keep feeling as if my time is up

Postby Tel1 » Mon Nov 04, 2013 11:53 pm

Hi There

I have felt like you *many* times...it is a nightmare when it gets bad...I use to think I was going mental, sometimes
I still do have patches like you have explained... I try to pull myself out of it when I get like how you have explained
One way I have found, is just be near people, never be on your own when it gets that bad, as least you have someone
with you if you take a turn for the worst. they say that Fibro is all in peoples heads, well that's a laugh eh... I would say
it is all over our bodies not just in our heads...I still think after all I have said and done in the past that Fibro is just
something in us that makes us very nervous and like an inward trembling that just takes over our mental balance and
our brains just think the worst constantly....If I get what you get, then I just turn into a nervous wreck waiting for
the next dreadful thing to happen, and when it is all over, I then relax and wonder why me.. so I know exactly how
you feel.. just try to keep calm and be with someone you can trust especially when you have a flare up. :hugs:
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Re: Keep feeling as if my time is up

Postby zappa20 » Tue Nov 05, 2013 6:58 am

How low is your iron count? Anything below 9.5 even in a fit young healthy person could certainly cause fatigue and meemory problems .And if lower could also possibly contribute to chest pains. Has your GP done a blood count recently, or given you some iron to bring it back up?

I felt terrible when I had severe anemia.
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