how do I keep on doing this

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how do I keep on doing this

Postby dazzleship » Tue Sep 02, 2014 1:29 pm

hi all :grouphug:

well here I am with yet another question. sorry.

I just need to talk to someone about.. well, about this stupid fibro. lately I just feel like I'm getting worse and worse and it scares me, makes me angry, upset, and I just don't know what to do. I don't know how to keep doing this day after day with no end in sight to the pain and tiredness.

a year or so ago, I didn't use any crutches for walking. but I got so tired and in pain after a day out (to the shops for example) that I ended up getting crutches - using first one and then two. and I was able to walk a bit further when going out somewhere, as the crutches helped with the pain and tiredness.

but now.. very recently.. I feel like I'm getting back to the point I was without crutches - like the tiredness and pain is becoming too much yet again. I don't understand why the crutches aren't helping like they used to.

but where do I go from here? I got the crutches, they helped, now they're no longer helping - what do I do? :cry: hubby and I went for a little day out to a castle yesterday - I enjoyed the day but was tired afterwards and in the evening - the pain and cramping (big toe sticking straight up) in my legs was so bad I just wanted to cut them off.

I'm trying to talk to hubby (he is my rock and I couldn't live without him) and he says it's alright, he'll help me through - but through what? what more do I have to put him through with my uselessness?

I couldn't wash my hair this morning :oops: cos my lower back is too sore to bend over the bath. I get excrutiating pain in my back just from standing at the sink for 5 mins to wash dishes. I feel increasingly more and more useless and I know I'm getting worse but I don't know what to do about it.

right now I feel like I can't do anything that doesn't involve sitting, cos I'm just too tired and too sore. resting isn't working, crutches aren't helping - I'm so scared.

please can somebody tell me what do to? what does the future hold for me? :cry:
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Re: how do I keep on doing this

Postby rich44 » Tue Sep 02, 2014 1:55 pm

Time to look at getting yourself a boot scooter?

I'm thinking about going halves with the mother in law. There's loads of places that do day hire now to, perhaps you could try that?

Shopmobility are in lots of city centres too where you can borrow one for the time you're in the city centre shopping.

I know how you feel, I often use a stick but my hands and elbows hurt so much it makes it really hard to use. I long for the days when I can stand up without letting out an involuntary moan in pain.
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Re: how do I keep on doing this

Postby Lindilou » Tue Sep 02, 2014 2:00 pm

I think it's time for a serious chat with the doc and to get his to refer you ....somewhere ?! :hugs: :grouphug: :hugs:

Re: how do I keep on doing this

Postby stripes64 » Tue Sep 02, 2014 2:13 pm

Back to the Doc's and a change or increased medication needed, perhaps seeing a rheumatologist an even better idea, just don't give up it can't be cured but you can lead a better life than you're doing at the moment xx
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Re: how do I keep on doing this

Postby marie marrison » Tue Sep 02, 2014 3:09 pm

my best friend has been in your situation 2 years ago , she has now a scooter for taking a lad to school and get a few bits in the shops and she also

, as a wheelchair, I do thing that u should ask to see your doctor or your rheumatologist to be referred to a neurologist. :lol:
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Re: how do I keep on doing this

Postby Theresa34 » Tue Sep 02, 2014 3:35 pm

You have all my sympathies hun x I use a cane occasionally, like today. It hurts the heck out of my hand even though its padded. There are a few self help things to try like swimming, Pilates, tai chi etc. I found the Pilates really helped me. Haven't done them since my flare but going to get back to it. Can you use a shower or wash your hair when you're in the bath rather than lean over it? That would def kill my Lower back. Also look into meds, get a referral to a rheumy if you havent got one yet. He's more expert than the gp with this illness. I also find moving painful to begin with but I usually feel better for it. It's just finding the motivation!
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: how do I keep on doing this

Postby lisa holden » Tue Sep 02, 2014 4:06 pm

im 38 with fibro. if i sit down i seize up, best to keep busy busy busy and u end of forgetting the pain. if your bored try voluntry work like me. sitting around being depressed and sore does not help it just worsens things. i find injections help a lot. hot water bottles on your back are much better than medicines x hope u feel better soon xxx
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Re: how do I keep on doing this

Postby stephdawn » Tue Sep 02, 2014 4:52 pm

Hi dazzle ship. I was diagnosed about 14yrs ago and I'm on 46yrs. At the time I had 2 girls growing up! It was very frushtating as I couldn't do it. Luckley I had a few friends and family to help. It wasn't until 3yrs ago when I had 3 mini strokes and my husband had to give up work to become my carer . At first he found this quite hard as he has always worked. But as time has gone on he is my rock and he does amazing things for me. Some days I use a stick but when we go shopping I need my wheelchair. This can be very frustrating as I feel I am the youngest in a wheelchair around the supermarket :cry: the dr s that I have now are very helpful and understanding. I also have cfs which is associated wth fibro and they have now discovered I have IBS after being taken to hospital 5 times since last oct with acute pancreatitis. :yikes: what I have learnt through out the last few years is just let your body tell you how you feel, if it says tired then just do what you feel you can do. Also don't worry about your husband he seems to understand and if you explain to him how you feel then that will be great. Any time you need a chat I'm always here for you. Take care and hugs coming to you xxx
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Re: how do I keep on doing this

Postby rich44 » Tue Sep 02, 2014 6:46 pm

I keep an anonymous blog via WordPress quite a few people follow it and I just upload how I'm feeling, how fed up I am, what's annoyed me etc.

It's like shouting back at the world, I find it quite cathartic and it's not easily trackable back to me so font have to worry about work or family seeing it.

I also use the FibroMapp app on my phone to record how I feel each day, meds taken, pain levels and what it prevented me doing that day, that really helps me too and I can easily print it out or email it to show how I'm doing to Dr's etc.

You can also ask your Dr to refer you to the wheelchair team at your local hospital, you can then get a free wheelchair from them if you meet their criteria or they will give you a voucher to the value of the NHS one and you can use that to buy a better one elsewhere.

I'd recommend doing what the mil does and simply hire a bootable scooter when you're going somewhere you're likely to need one.

I wonder if you should ask your gp to refer you to your local mental health team? I don't think you're crazy (no more than the rest of us) but they could get you access to talking therapies. I feel that you could perhaps benefit from that to understand no matter what you're not useless and your husband loves you and wants to support you.

Hope you're feeling better soon
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Re: how do I keep on doing this

Postby Butterfly8588 » Tue Sep 02, 2014 6:49 pm

Hi dazzleship,
I'm so sorry you're feeling so bad hun, as others have said I think you need to go back to your doctor. May I ask how long you've had fibro? If its quite recent then you really can only give yourself time to adjust mentally as well as physically whilst going to the dr and get your meds sorted. I've only had mine 5 years, which compared to some is nothing, but I still haven't accepted it very well.
I really hope you get to a better place soon hun.

Gentle hugs xxx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: how do I keep on doing this

Postby ..:: lisa ::.. » Tue Sep 02, 2014 7:51 pm

This post is exactly how Ive been feeling recently.

Like you everything hurts. I try to stand under the shower to wash my hair and I topple over, I bend over and as you said lower back seizes up.

I am sick of being in pain, I'm sick of sitting or laying doing nothing, I feel like my life is really passing me by.

I am also scared and worried about the future, I want to go back to work, I want to have my life back but things are getting worse not better.

As others have said gp is the only step, the problem with that is when the gp is at a loss as to what to do next.

Im sorry I dont have any thing positive or encouraging to say, I think I just want you to know that youre not alone in feeling this way.

Gentle hugs to you and I really hope you get some help xx
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: how do I keep on doing this

Postby carolad » Tue Sep 02, 2014 10:15 pm

One tip for anyone who has back pain when bending...make sure you don't bend your back,bend your knees and fold at the hips instead. It means having to stick your bum out and it does feel quite strange at the start, but it takes the strain off the lower back. I learnt this when I took Alexander Technique lessons - I can now lean over to any level, while keeping my back completely straight.

This video gives a good demonstration of what I mean: ... ackac.html
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Re: how do I keep on doing this

Postby rich44 » Tue Sep 02, 2014 10:46 pm

Now if I could manage that without bending at the knee.....


Great tip
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Re: how do I keep on doing this

Postby zappa20 » Wed Sep 03, 2014 12:38 am

dazzleship wrote:hi all :grouphug:

well here I am with yet another question. sorry.

the pain and cramping (big toe sticking straight up) in my legs was so bad I just wanted to cut them off.
please can somebody tell me what do to? cry:

I get this and can say it's caused by your lack of walking about, it's the tendons shortening due to insufficient use. Reason I have it is severe lack of blood flow in the legs which is restricting my mobility as my legs run out bold supply so quickly and hit the wall. There are several exercises to stretch the tendons you can try to overcome this, as I know from personal experience when the big toes stands up to attention in the right direction it's damned sore at the time . It's also very bad for the joints and can lead to balance problems starting in your feet.

I know it's difficult when you are experiencing pain etc, but if you want to ever improve things, stretching these tendons in your legs and moving around is a necessity. We're not designed to be inactive or mainly sitting about. Tendons and muscles are like strong elastic bands designed to stretch as we move, if we don't use them properly in walking including stairs etc, they stiffen and shorten and before you know it, cramps and your big toes starts to stand up out with your control and look you in the eye. Also if mainly seated your back core muscles will weaken making it more painful to be in a standing position as they can't support you any longer being so weak.

If I was you I'd ask for a referral for some sort of physio or if that not possible look online for leg and foot tendon stretching exercises, even the ones recommended for people with vascular problems in the booklet 'are your legs killing you' issued by the NHS would be of initial help.
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Re: how do I keep on doing this

Postby whoami » Wed Sep 03, 2014 1:55 am is good to get everything off your chest so you can move on. It is normal to get down once in a while.

Over the 25 years I have gone back and forth from needing aid to walk to being fine on my own. I have gone through days when I can hardly move my back and neck to playing with grandchildren. It is ok for you to be frustrated and upset.

If you find you need aid then use it. Don't think about how others may feel or judge you.

You may find that you seem to go through bouts of feeling worse. Take those days in stride. Do a little less and use whatever you need to get by. A trip to your Dr may be beneficial. You may need your meds adjusted, maybe your Dr can suggest new therapy or just be a sounding board.

It is good to hear your hubby is so supportive. This is his illness also. We sometimes forget that. Let him help you, that could be his way of coping. Ii like you have a rock for a hubby.

Things can feel better. Try to not stress. Do what you can, when you can. You owe nobody any explanation.

I hope things feel better for you. I find walking, hot baths with Epsom salts and my meds are what help. Try some Arnica gel on your legs.
Also some meds give off side effects that can make you feel worse by mimicking fibro to your Dr.

Expect the worst in life you won't be disapointed and you'll be prepared!
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