What to do?

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What to do?

Postby Sharplucky2 » Mon Sep 08, 2014 10:14 pm

Hi guys, basically ive been struggling with fibro for the last 5 years, the worst pain i get is in my hips, its never been as bad as it is now it feels like the hip is out of place every time i walk.

I have been to the gp and he has said to me on several occasions to read online about fibro and to do more exercise, so this time when i went to the gp i went and saw a different doctor, she prescribed me with naproxian to take alongside my tramadol, which she says she help me sleep and ease the pain, ive been taking these for the last few days with no help whats so ever!

I cant sleep at night as im in so much pain i cant get comfortable at all, and on top of that ive been off work now for a week and some days. i worry that its going to get so bad id have to give up work which financially i wouldnt be able to do.

My gp has referred me to a rheumatologist, i have seen two before and one them did an mri and told me to go for a run as im to young to be experiencing the pain im in (im 21.) so now when i go and see another rheumatologist i'm worried hes going to say a similar thing.

Also ive applied for pip as i get severe anxiety when i go somewhere new and struggle to cook or have a bath without help, but thats taking forever. i applied back in feb 2014, they received the form april 2014 and atos said they are still looking at all the facts, but im so worried about the interview as ive heard so much bad stuff about the assessments.

Basically can anyone help? I need advice on if this pain is going to get worse? And just some reassurance that things will get better, sorry for the essay. All advice greatly taken. :) x
Last edited by FluppyPuffy on Tue Sep 09, 2014 9:47 am, edited 1 time in total.
Reason: Made paragraphs clearer, as well as twiddled with punctuation/grammar, for easier reading.
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Re: What to do?

Postby Theresa34 » Mon Sep 08, 2014 10:20 pm

Hopefully your new rheumy will prescribe something better! Mine prescribed me Amitriptyline. I went from insomnia constantly to lovely sleep! It's also helped me with the pain but it took at least a month. I've since been given gabapentin to take alongside it as I needed to up the dose on the ami but it made me too groggy. Exercise wise i do Pilates which really helps my back pain and other muscles. I don't take painkillers anymore. Or if I do have to, then it's maybe every other week and maybe less than a handful. I've taken naproxen last yr for arthritis, gave me a very painful tummy. Perhaps ask dr for something to protect your tummy like omeprazole or ranitidine. A few others on here take it.
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: What to do?

Postby Sharplucky2 » Mon Sep 08, 2014 11:08 pm

Hi, thank you so much for your reply, i been given some antacids to take along side the naproxian i think its the one you said omprezole, (not very good with the spelling of these pills) ive been given amatript before and only a low dose but it knocked me out so much i couldnt get up the next day so i couldnt take it anymore, feels like my body cant take these drugs very well.

Hopefully like you said the rhomy will be a good one.
My mum and brothers suffer from fibro as well but theres is worse in their knees so there able to have steroid injections to help relieve the pain.

Im trying to think positive but sometimes it can be very difficult :( xx
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Re: What to do?

Postby Theresa34 » Tue Sep 09, 2014 9:24 am

There is a trick to taking Amitriptyline. A few of us have worked it out so far. You don't take it at bed time. If you do, you will be a zombie for the next day. I had to work it out on my own but found taking it at 8pm every night is best for me. I only started struggling with severe fatigue because I was on a high dose. I started on 10mg then went to 20mg to 25mg then to 50mg which was too high for me. I'm now back to 25mg and taking gabapentin alongside it. You will find what works for you x
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: What to do?

Postby rich44 » Tue Sep 09, 2014 9:42 am

Yes definitely take it a couple of hours before bed then you'll go to bed really sleepy
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Re: What to do?

Postby Helhit » Tue Sep 09, 2014 10:17 am

Hi I couldn't get on with ami - I got to the stage of taking it at 5pm and I still couldn't get out of bed the next morning!!

I have had a bit of success with gabapentin though. It takes a while to get into your system. I made the mistake of thinking I was ok and told Dr that I wanted to reduce the gabapentin as I was feeling much better. Well , she warned me - and she was right!! After 2 months ish all the old pains started up again and last week I couldn't do anything. So back up with the gabapentin I go!!!!

Btw my latest problem is not being able to get to sleep at night - so I may be taking the ami again soon!!

Good luck with finding the right combo. Wouldn't it be great if there was just one pill that would work for all.
Fibro is like the wind. You can't see it and when it flares up it knocks you off your feet!
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Re: What to do?

Postby FluppyPuffy » Tue Sep 09, 2014 10:30 am

:cow-wave: :cow-wave: :cow-wave: and :welcome: to our little FibroFamily.

With this being your intro topic, I've jiffled you over into here as it's a more suitable board. I've also made some of the paragraphs clearer in your post to make it easier to read. One of the delights FM gives some of us is problems with reading what looks like a large block of text. We start reading, get lost, and then end up going over the same few lines again and again :oops: :oops: :oops: Making the paragraphs clearer gives us a better chance of reading all the way thru a post :oops: :oops: :oops:

I'm sorry to hear how things are for you at the moment. And worrying about what the future could hold is more than understandable, it's something that most of us have done, and still do at times along the way. Unfortunately such thoughts and worries are the sort that FM likes to feast on, the more we worry, the worse things can, and do feel. The way a good number of us tend to deal with this sort of thing is to focus more on now, living in the moment as doglets tend to do. The thoughts about the future are still there, but pushed more to the back of things as the future has yet to happen and is something that we have very little, if any control over, whereas "the now" is with us, and is something that we can shape pretty much immediately to something that will hopefully mean that those concerns about the future will at least be reduced to a degree.

With the vague and unpredictable nature of FM, there is no 100% definite answer to questions about whether things will or won't get worse for some one. Things do change for us over time, with moments where things will be worse. In amongst these times tho, there are also chances that there could be periods where things show improvements, even go back to what could be described as "normal", as well as every single possible alternative in between. If you have a bit of a looky and a read across the boards, you'll find examples from others who have found their way thru these times. Sometimes things have been quite turbulent, at others, it has been much quieter.

Naproxen is a med that seems to be being prescribed more frequently for FM. Altho it is primarily for dealing with inflammation, it can also provide some degree of pain~relieving for some of us. I have it in my cocktail, and I've found that I need to take it regularly to get the best from it. With you already taking Tramadol, it might also be worth looking into whether it could be suitable for you to add paracetamol to the mix as well. For some, adding paracetamol in helps enhance the effects of Tramadol, making its pain relieving effects more pronounced to a degree. This is something known by the medical fraternity, and is sometimes suggested to patients in an attempt to try and help reduce pain levels. Your GP should be able to advise about this, or your local pharmacist may have some helpful insight.

Wrt to the Rheumy, unfortunately past experiences do tend to colour what we may be expecting from additional appts, esp with someone new. Not all docs/consultants/specialists are the same tho, in amongst the dinosaurs and troglodytes there are some decent ones. If you can try pushing such worries to the side, even to a small degree, and prepare yourself for if you are going for your first ever appt with a Rheumy, then there's a chance you could get much more from an appt than you might expect. If you go back to basics, as if you don't yet have a dx, and compile details of symptoms, problems, situations etc about how you are being effected, then it will all help in creating that overall picture needed by the Rheumy to try and help you as best they can. Yes, there are still those that shouldn't have got thru The Ice Age, but there are also the decent ones, so maybe try and put this are the forefront about the appt and who~nose....you may find things go much more favourably than you think.
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Re: What to do?

Postby FluppyPuffy » Tue Sep 09, 2014 10:32 am

Helhit wrote:Hi I couldn't get on with ami - I got to the stage of taking it at 5pm and I still couldn't get out of bed the next morning!!........Btw my latest problem is not being able to get to sleep at night - so I may be taking the ami again soon!!

If Amis don't suit, then it may be worth asking about Nortriptyline. It's a sister~med to Amis, works in the same sort of ways, but is said to have fewer side effects and better tolerated.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: What to do?

Postby Helhit » Tue Sep 09, 2014 11:22 am

Thanks I'll bear that in mind.

I just don't get how I can sleep for Britain during the day yet as soon as I get into bed I'm suddenly wide awake. I lie there fidgeting and so many thoughts come into my head. I'm too tired to read as well.

I've got out of the habit of trying meditation, so I think il do that sgsin,as it always sends me to sleep
Fibro is like the wind. You can't see it and when it flares up it knocks you off your feet!
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Re: What to do?

Postby gilld » Tue Sep 09, 2014 2:04 pm

hi...sorry i cant offer much in way of pain relief as am struggling like hell too but for advice on benefits and help google fightback4justice who are amazing and volunteers x
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Re: What to do?

Postby Sharplucky2 » Tue Sep 09, 2014 10:27 pm

Hi Guys!

Thank you so much for all your help and support truly means alot, i have never been on a forum like this and its really lovely to hear everyones tips and other stories about their fibro, sometimes with this disease you feel like your alone and no one understands so its nice to get things off my chest.

Unfortunately the pain is still really bad today to the point where i am now immobile, i had a phone appointment with my GP as i couldnt go out to the doctors and they have prescribed me more Tramadol on a temp basis and they have signed me off work now till the end of the week to get me over this flare up hopefully, its just very frustrating at the moment as i have just started this job and already my attendance record doesnt look very good, anyone got any advice on how to cope with working life with fibro?

I will try taking paracetamol with the tramadol especially if that makes the pain die down.

When i see my rheumatologist i will ask him about the gabapentin and also the sister pill to ama as i really didnt get on with ama, i just need something to help with the night time as that is the worst! Anyone got any tips on the best way to get comfortable? At the moment i have a pillow under my leg and also when i lie on my side i have the pillow between my legs but that doesnt seem to work very well.

I am a very positive person normally, i hate walking with my crutches so i try to avoid them as much as possible i hate going on about the pain im in so i wont tell anyone unless they need to know, i really hate sympathy to and so i try to just sit there and think to myself that someone out there has it way worse than me and that normally helps but at the moment the pain is so bad that all i can think of is how much it hurts, i find myself in tears for no reason and i just feel like its taking over my life :(

If anyone else has any similar symptoms and have found ways to cope id love to hear thank you xx
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