Anyone else struggling?

All your fibromyalgia experiences, questions and answers.

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Anyone else struggling?

Postby caz82 » Fri May 03, 2013 11:06 am

Hi all
I'm new here so not sure if this is in the right place but here goes, I was diagnosed last year, though been like this for many years, my problem is that over the last few months my symptoms seem to be getting worse. I'm more tired than usual and getting pain in place's I've never had them before and have found that I'm taking more and more time off work. I'm really struggling to manage my symptoms and am un sure what my next step should be I've been to my doctor and he fobs me off saying I'm on strong pain killers so if any one has any idea's i'd be really thankful
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Re: Anyone else struggling?

Postby FluppyPuffy » Fri May 03, 2013 11:38 am

Sorry to hear things are becoming more difficult for you caz :grouphug: :grouphug: :grouphug: Is there another GP you could see at your surgery who might be more supportive and helpful?? If so, try to get an appt to see them to go thru things and have a full review of meds, treatments etc as there are things that might make things a bit more comfortable and manageable for you. If there isn't a different one, then you might have to consider changing surgeries to get the help and care you need.

As well as painkillers, there are other types of meds that can help ease the intensity of symptoms. This linky tells you about some of them http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx Some FMers find that physio, hydrotherapy, acupuncture and massage can help them as well. It's a case of trying things tho to find what makes a difference to you.

If there isn't a different GP you could see or changing surgeries isn't an option, then changing the way you approach your GP might bring about a better reaction from them. Sometimes going armed with info from reliable and reputable sources and explaining in a direct manner that you have been looking into things and have come across different things being used in FM management that you haven't tried, so you're wanting to know if they might be something suitable for you to try to see if they help you, so what does your GP think.
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Re: Anyone else struggling?

Postby LouLou » Fri May 03, 2013 1:48 pm

Hi caz

Sorry you are suffering right now. I go through stages where I'll have a good few days/weeks and the fibro will decide to haunt me again and I'm bed bound till it passes.

I used to get really upset when this happened but now I just listen to my body and rest through it. I swear by a soak in the bath and I use Radox muscle soak bubble baths and bath salts. I also use lavender to help me sleep at night.

I also have lots of hot water bottles for the parts of me that hurt the most. The main thing is to rest at the moment until it eases off. We also have a section on here called "Help/Tips on coping" which we have all added to. It's full of so many tips and things people have tried and tested and you never know what you may find that works for you.

Also, agree with Fluppy about the GP issue. We are all so different and one painkiller may work for one of us but not the other. Alot of us are on a combination of painkillers and it normally takes a good few months before some tablets get working in your system so sometimes you have to try and presevere.

however if what you are taking really is making no difference to you then you have every right to go back and ask for a review and other options. Plus there are various therapies your Gp should have told you about like hydro therapy/physio/pain clinics. If your current one isn't helping then changing would really benefit you. FM unfortunately is with us for the long haul and you need a GP who is willing to work with you to help.

Hope that helps Caz. Sending you some :hugs: :hugs: :hugs:
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Re: Anyone else struggling?

Postby shazq » Fri May 03, 2013 5:49 pm

Hi Caz

Sorry to hear you are struggling. :hugs: It does sound like you need an understanding gp, it makes a big difference with fibro. You should ask to have your meds changed as it sounds like they are not working, sometimes it needs a combo of meds to help keep the pain under control.

I tend to get different pains in the summer, i am more achy & fatigued but because the evenings are still cold i am finding i am in more pain of an evening. I find a hot water bottle helps & Tens machine. Hot baths & Heat pads might be worth a try as well.
I have trouble fighting the fatigue and just have to go with it but that does not help if you are at work. Try to pace yourself throughout your day, take lots of breaks to recharge your batteries.
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Re: Anyone else struggling?

Postby painprincess1 » Sat May 04, 2013 7:26 pm

yes i agree with last post get a different dr .im so lucky my dr is very very blunt but he believes in fibro 100 persent.he dont suger coat anything for me but then again he has tried about 100 things to help with the pain. dont be brushed off there are things that do help xxxx
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Re: Anyone else struggling?

Postby caz82 » Tue May 07, 2013 10:12 am

Thanks everyone i think maybe your right about needing to see the gp but i think i'm going to have to change surgeries my gps dont seem very informed when it comes to fibro making very vague comments like " from what i understand about fibro it's kinda like this....." and although i'm on all the appropriate meds pregablin 300mg twice a day, tramadol 50mg 8 a day(i asked for it to be reduced so that i can work), amitrypaline 50mg each night, duloxetine 20mg twice a day, and have had physio and hydro therapy i still find that the releif i get is minamal, i've tried explaining this to my gp and it still gets me no where. I was wondering weather anyone else has found that the medication they have been put on starts to become less affective?
Also i'm worried that i'm having to take more and more time of work and might get the sack , i'm lucky in that my employer has tried to change my duties to make the job more managable and has even allowed me to become the only part time worker in the company to try and improve things for me but now even this doesnt seem to help a dont want to seem ungratful for the changes they've made but its beginning to get too much for me and i dont know how to explain this to my employer with out them thinking that i'm trying to get out of doing my work, any sugestions anyone?
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Re: Anyone else struggling?

Postby LouLou » Tue May 07, 2013 11:50 am

Hi Caz

I work like you and had my hours cut from 45 to 30 a week. I still have bad days, I still have days off but as long as your boss understands this is the nature of your illness try not to worry too much what other people think. Though I am still guilty of worrying about this myself, but the way I see it, when I am at work I do a good job, I get everything done on time and there are no complaints about my actual work so until there are then I'm trying not to think about anything else.

Is there a way you can have a laptop to work from home? This would benefit your company as well as you as you could keep up to date on your bad days while still resting. I'm still fighting for one but I refuse to give up on it lol.

In terms of meds, yes I have found that the longer I have been on them the less effective some of them have been. I had the dosage and strength upped a few times but found the side effects made working even harder than the pain itself.

Now I am only on Tramadol (50mg 1-2 4 times a day) and Co Codamol (30/500mg same as Tramadol) and I find these to be the best for me while working at the moment. The dosage dulls the pain to a bearable level and I don't get any side effects from them anymore - though I have been on them for quite a while now.

It all depends on how your meds make you feel, and sometimes trial and error will help you figure out the best combination fo ryour. Even though I can cope most days I do still struggle and there are days where the meds don't scratch the surface of the paina nd that's when I know it's a bad day and have to go home.

Do you have a HR department at your company? They should be clued up on all the employment laws in terms of long term illnesses and what the company are legally obliged to do to help you carry out your job. May be worth printing the symptoms of FM off and makig a few notes against each one to show how this affects you personally. Doctors notes can be used to back you up too.

Hope that helps a bit
xx
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