Help!!

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Help!!

Postby Katie_123 » Sat Oct 31, 2015 7:23 pm

Hey everyone

Was just looking for some advice on medication and stuff please to see peoples experiences and how it's affected you.

I'm 25 years old and have had fibro since I was 19.

I wrote on here about 3 years ago asking for some advice on teaching as a job as I always wanted to work with children.

Sadly I ended up giving up the PGCE, and last year I tried to work with children again and became a nursery nurse, but after 3 weeks I had my first ever massive flare up and had to finish after just moving in to my first home with my partner.

I now have an admin job and work 4 days a week which I am happy in.

However in June, I had a flare up again.

Not bad for one a year, but since this one I just haven't felt myself.

My doctor put me on gabapentin. As I've tried amnitryptiline before but made me feel awful. However, I've been reading the side affects of gabapentin, some of which are pain and tiredness!!

Because of the side affects, I was a bit dubious about taking these, so my doctor said I could just take 1 a night rather than build them up.

I found that it helped my sleep for about a week, and now I don't feel any different at all, except I'm in more pain all the time.

I've just got a place on the pain management course. I've only been to one session, and it was quite interesting so hope this will help.

I'm really struggling at the minute, I can't stand for more than 20 minutes without being in agony. I just don't feel myself!! I'm so used to being either in pain or not at all, so I don't know how to cope.

I'm also trying to go to restorative yoga (hot pod) once or twice a week when I can. I'm really lucky to have an extremely supportive partner and family. But not sure how to get out of this rut I'm in. I don't understands what's changed, apart from this medication. My partner said he thinks I should come off it as i haven't been right since I started taking it. And I'm seriously considering it. As don't want to up it anymore, and don't feel like it's doing anything.

Any words of wisdom/advice would be much appreciated. I'm getting married next year and hoping to be able to save enough to buy a house the year after. It's a really important time for me so don't want to lose control of this now when I've controlled it so well for so many years.

Many thanks,
K xx
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Hi.x

Postby Hellyn » Sat Oct 31, 2015 10:15 pm

Having a rough time eh?

My gp put me on gabapentin and I found it made me feel worse where as my ex-father-in-law swears but it for his arthritic knees. I stopped taking it as it made me feel like death. It is all trial and error because Fibro is such an individual condition even tho the symptoms are just that.

I too have Amytrip, but I take mine for the night and I find it does help.

The pain management team should be a good place to start, they should have a good team and be able to direct or refer you to support, that is what they are there for. I did the course and found it helpful and knowing the Exeter team is a good one. You can ask them about meds and other options..

Good luck Katie.x :-D
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Re: Help!!

Postby migrembe » Sun Nov 01, 2015 9:35 am

I have been on everything, with little or no success or debilitating side effects. I now take Duloxetine 30mg which is the lowest dose there is in the hope that it would give me some relief from the incessant fibro pain and cocodamol 30/500mg as and when, but 3 times a day. I also meditate twice a day and i find that it helps me take control of the pain and allows me to sleep better - most of the time. You don't say how long you have been on the gabapentin? People expect it to work like a analgesia, quickly, but that is not how it works but takes time to build up. Unless the side effects are worse than the normal fibro pain then try and take it for about 6 weeks. However i was on Gabapentin and then pregablin, one stopped me peeing and one made me pee all the time, can't remember which was which.

I think the pain management team is your best bet. Remember it is pain management. Although we know we have a chronic pain condition we want the pain to stop, for most people the best you can hope for is to reduce it.

I would try meditation, I find it helpful, before you try yoga and then add yoga moves in slowly very slowly. I like this one https://youtu.be/oBu-pQG6sTY but instead of doing a different set of yoga moves every day, add one yoga move per week or even longer.

And stop stressing, stress makes fibro pain worse.

Beverley xx
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Re: Help!!

Postby Katie_123 » Sun Nov 01, 2015 9:56 am

Thanks guys for the advice.

Beverley I've been on the gabapentin since June/July time.

Maybe I will give medidation a go, i do find it difficult to find time to stop though half the week as I work 8.30-5pm. By the time I get home; make tea etc... I don't know where the time goes..! Maybe I can try before bed.
I do find the yoga stretches help though, as it's only Restorative so quite easy going, and some of the stretches are similar to the ones that my physio gave me when I was diagnosed.

I haven't heard of Duloxetine before. My Doctor told me the only meds they can give me is amnitryptiline or gabapentin.

Up until the flare up in June, I've always managed well without meds at all. Really hoping I can get back to that point again.

They really emphasise the exercise at the pain clinic,
So looking in to buying a second hand cross trainer, as I used to feel really good doing that a few years ago. Even if it was just 10 mins a day. Will try anything now..!

Hellyn; I used to take amnitryptiline at night but found it gave me almost a "hungover" type feeling in the morning, which wasn't pleasant before work. Do you get that at all? Xx
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Re: Help!!

Postby Katie_123 » Sun Nov 01, 2015 7:02 pm

Hey everyone

Just wanted to share this with you,

I didn't take my gabapentin last night, and I feel lots better today alteady.

I went shopping, and still had the usual back pain that I'm used to, but nothing in my legs at all which is great.

When all week before stopping the meds my legs felt so so sore.

Also invested £30 in a second hand cross trainer, and decided to switch from cows milk to goats milk. (Not sure if this will make much difference but can only try, have read it can improve inflammation) so hoping things will start to improve a bit now.

Thanks so much for the support xx
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Re: Help!!

Postby Hellyn » Mon Nov 02, 2015 1:44 pm

Hi Katie,
Yes I do get the hangover.
I can take 30mg if it is bad, but I know others are prescribed more.
I use between 10-30 depending on the severity and what I have on the next day, if it is bad and nothing on I take 30 and sleep it off and find that by late afternoon i can do dinner etc.
It's all swings and roundabouts with fickle fibro...ho hum, but that is the nature of the condition.

blessings.x
Hellyn
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Re: Help!!

Postby Hellyn » Mon Nov 02, 2015 1:45 pm

Oh, and I'm not working now, medically retired.x
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Re: Help!!

Postby migrembe » Tue Nov 03, 2015 5:11 pm

It is difficult to balance what we have to do with the pain that we suffer, but you may find when you go to the pain management team they will say you are doing too much.
x


Katie_123 wrote:Thanks guys for the advice.

Beverley I've been on the gabapentin since June/July time.

Maybe I will give medidation a go, i do find it difficult to find time to stop though half the week as I work 8.30-5pm. By the time I get home; make tea etc... I don't know where the time goes..! Maybe I can try before bed.
I do find the yoga stretches help though, as it's only Restorative so quite easy going, and some of the stretches are similar to the ones that my physio gave me when I was diagnosed.

I haven't heard of Duloxetine before. My Doctor told me the only meds they can give me is amnitryptiline or gabapentin.

Up until the flare up in June, I've always managed well without meds at all. Really hoping I can get back to that point again.

They really emphasise the exercise at the pain clinic,
So looking in to buying a second hand cross trainer, as I used to feel really good doing that a few years ago. Even if it was just 10 mins a day. Will try anything now..!

Hellyn; I used to take amnitryptiline at night but found it gave me almost a "hungover" type feeling in the morning, which wasn't pleasant before work. Do you get that at all? Xx
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Re: Help!!

Postby Katie_123 » Tue Nov 03, 2015 7:29 pm

Thanks Hellyn and migrembe.

Yes they have kind of implied about doing too much & pacing. But I feel like I don't really have a choice. I can't cut down my working days, but equally I can't cut down on house work etc.. As it has to be done.

If I was lucky enough not to work I could pace myself really well but unfortunately not an option.

I'm trying to plan my weeks a bit better now though, and try to have breaks when I can. Guess that's all I can do for now xx
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Re: Help!!

Postby migrembe » Tue Nov 03, 2015 9:39 pm

Our bodies speak to us, but we do not listen. It tells us we are in pain, but we do not slow down, we take a pill a hope we can ignore it. Until that it is, when the day comes and we can ignore it no longer and our bodies stop and we cannot get out of bed. When it happened to me I ended up having to spend the best part of a year in bed and believed i would spend all my life in bed, that and the bathroom. I had to retire from my job due to ill health. Now I live on benefits not because i want to, but because i have no other choice. If I physically could go to work every day, then I would.

For every good day I get, where i decide i can conquer the world, I then end up with 3 days in bed barely able to function.

Your body is telling you to slow down and if you don't then at some point it will stop you.

I know you feel you have to do all these things, but what would really happen if you didn't work as many hours or someone did the dinner or the dishes on an evening?

I wish you well. I write about my ups and downs on my blog.

Beverley xx
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