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The UKFibromyalgia Forums • View topic - Don't know what to do



Don't know what to do

Any tips on what helps you including alternative medicine.

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Don't know what to do

Postby Rachellou » Thu Oct 03, 2013 7:23 am

I was diagnosed officially back in Jan of this year I have suffered with it for 18 years previous I don't try to take too much medication and have held down a full time job.

In the last few weeks say about 8-9 weeks the pain has gradually been getting worse it's too the point that I can no longer walk without it hurting I usually suffer with upper body pain and backache but now it feels like it's also starting from my hips, tail bone area and shooting down my legs and to my feet I can't even sit down,

Not sure what to do because 3 weeks ago I was made to take redundancy because the company I worked for had no money left, I got another job straight after which meant traveling for an hour before even getting to work and on top of all this extra pain and not being able to walk I just can't do it, I've been trying a week to see the doctor but they haven't had any available appointments

It's gotten so bad I haven't been able to keep on top of my housework and it's getting me down.
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Re: Don't know what to do

Postby kazza65 » Thu Oct 03, 2013 8:09 am

Good morning

i will not ask how you are because i have just read that you not well. As for trying to get an appointment with your doctor i think that you need an emergency appointment don't mess about be firm with the little hitlers that will be on the end of the phone. My doctors are like this.

I get a lot of pain in my lower back and in my hips so you not alone i have to use a stick/crutches depending on how bad it is do you use one ??. i personally think that you are at the point that you are going to have to give in and probably take some medication. How do you sleep ?? If you don't sleep good this is the reason possibly that you are groggy on a morning and find it hard...

i know we all can't take the same medication but here's what i take and i'm plodding along will not say nicely but i'm there.. Pregabalin 200 mg three times a day 15 mg of MST continus 2 times a day and 30 mg at night also at night i take amitriptyline 40 mgs at night and they do really help me sleep.

Good luck with your doctor and hope you get some ease too...

Karen
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Re: Don't know what to do

Postby whoami » Thu Oct 03, 2013 8:35 am

Rachellou...As Karen said you really.."need"..to see a Dr..

I am a little concerned as this is new and different pain in your lower back and the pain shooting down your legs. It sounds "severe", not just new added pain. This new pain may not have anything to do with the fibro. I would suggest a trip to the emerg dept.

One of my Dr's who himself has fibro, he said hip pain is the pain that is most common with fibro. He is an anesthesiologist, he has given me blocks for the pain in my hips and through the throat into the spinal column. He said to always have new lower back pain looked at.

I am sorry this is effecting your ability at work. The long commute is likely too far, too long in the car. Right now house work is the least of your problems.

You may have to take medication. Almost everyone with fibro does. You also may need something totally different from someone else. I have taken many things over the 24 years but for the last 8 it has been the same med.

Please, try and get into the Dr, be pushy. If you can't get an immediate appointment, go to the E Room.

Here's hoping you get some relief, soon. Keep us informed.....Lorraine
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Re: Don't know what to do

Postby Marsha76 » Thu Oct 03, 2013 9:07 am

I've had Fibro for 20 years and I started experiencing the type of pain you are describing in your hips and legs. I had a hard time getting in to my doc too, so I went to the ER. They did some x-rays then an MRI. I had a ruptured disk and the spine was crushing my nerve canal and was causing the hip and leg pain. It was damaging the nerves that run down the legs and if I didn't have surgery soon (like a week later), I was going to loose complete function of my legs. So, here 5 weeks later I can tell u that the surgery was a success and if I was u, would be able to hold down a job and the housework again. :) But, since this is me, I do have fibro severely and the hips and legs feel better from the spine problem, but my fibro is still here.

But, if yours is not spine related (which u might should rule out, especially since this is a new pain and it's severe as you described it),
and it is the Fibro, maybe meds would work for you to enable you to cope with the job and housework.
The ER will help u with meds until you can get in to see your doc.

Good Luck and I hope you can get to feel a little better real soon!
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Re: Don't know what to do

Postby migrembe » Thu Oct 03, 2013 9:34 am

Whenever i go to the Dr's with a new symptom he always says when did it start and what changed?

Although you may think that being made redundant is the problem and finding a new job quickly is a good thing it's not all that it seems(not needed) finding another job and starting work (new environment and wanting validation from strangers) travelling an extra 2 hours a day (stress and tiredness) all these things come together causing your mind to struggle to come to terms with the changes.

Pain medication may help in the short term but try and think of ways to reclaim your balance and peace of mind, because the mind can make everything worse to the point where there doesn't seem to be any way out.

if you think back 18 years there may be one or more stresses that made the mind tell the body it has had enough.
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Re: Don't know what to do

Postby Rachellou » Thu Oct 03, 2013 8:32 pm

Hi

I finally got in at the doctors and he has increased my tablet which has made me feel worse today, the doctor has advised me that it will make me feel rubbish to start with but then things should get better,

The new pain I was feeling he believes that it was due to my condition and that I need to monitor it,

I'm no longer sure if I can carry on doing the 40+ hours work and I'm not sure what else I can do.

God I'm so fed up!!
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Re: Don't know what to do

Postby FluppyPuffy » Thu Oct 03, 2013 8:41 pm

Rachellou, if you're having concerns about work, speak to your line manager/boss~type person. Under the Equalities Act, they are legally required to make reasonable adjustments to your job so that it is more suitable for you do with FM and any other illnesses/conditions you may have taken into consideration. The "reasonable adjustments" vary from job~to~job and person~to~person and can make a huge difference to how you are able to carry out your current role.


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Re: Don't know what to do

Postby LouLou » Tue Oct 08, 2013 1:38 pm

Hi Rachel

Just to emphasis on what Fluppy said about work. I used to do 40+ hours a week, then FM reared it's very very ugly head and I just couldn't do the hours anymore. I pushed through for a while but found that when I got home all I did was flop on the sofa (gently lol) and sleep till I had to get up the next day. I was the same at weekends all I did was cry with pain and exhaustion.

I spoke to my Boss about this and they let me decide how to cut my hours. It was a bit of trial and error for about 6 months, I started cutting by an hour a day, then changed my start time to start a bit later in the morning and then I found the right combination of hours. I now do 30 hours a week starting at 9am. I had to have my contract changed and my salary was affected but I find that this is much more manageable for me on a weekly basis. I still have bad days where I need to leave a bit early or get to work a bit later but my boss understands this and lets me come and go as I need, as long as he knows I am safe and ok.

I have less days off sick, I still have them but when I look at the difference in where I was a year ago my situation has massively improved. I still have days where I get home exhausted and in a lot of pain but I also have days where I am ok.

It is definitely worth talking to your Boss and be completely honest with them. As Fluppy said they have to make reasonable adjustments for you and you may find that just by tweaking your hours a bit you can still manage work. Having a laptop is another option which may help you especially with such a commute - maybe working from home from time to time?

With regards to your "new" pain I find that I have time periods where certain parts of my body hurt much more than usual. Just recently my back started to really hurt which was very unusual for me as I'd never had back problems before and it was the one part of my body that had escaped the dreaded fibro - or so I thought lol. Had all the checks and found it was FM related afterall.

You know your body better than anyone else so if anything new crops up always get checked as not everything is Fibro related. I kept a log just before and when I first was diagnosed of what I did each day, what I ate, how I slept etc to pin point triggers and see what affected my pain and fatigue. Plus that way when I did see my Doctor about anything I had some sort of history to help him and it was all noted so I wouldn't forget things and remember them afterwards lol.
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Re: Don't know what to do

Postby helen.whittaker.125 » Tue Oct 08, 2013 3:37 pm

I used to work but between the fibro and spondulothisis I've had to agree with the dr and am currently signed unfit to work, I'm hoping that they will be able to sort out my back but I've been told that as I've had the spondulothisis for probably 12 - 13 years now the best they would be able to do is un trap the nerve roots, I'll be left with the pain, I've finally got myself an appointment this afternoon, it's an emergency one but the receptionist was great and told me to tell him it's the worst pain I get....... Not hard to do lol, hopefully it will help. I've managed 12 years without pain killers but I'm having to swallow my pride and give in to them now for my own good and my families sanity as sleep is a real struggle for me now so I will admit I'm a little snappy at times lol. Good luck and yes see a dr re your back mine would have been simple if it was delt with 12 years ago xx


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Re: Don't know what to do

Postby helen.whittaker.125 » Tue Oct 08, 2013 6:17 pm

Results of dr appointment , different meds more variety too..... Well they do say variety is the spice of life.............


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Re: Don't know what to do

Postby Rachellou » Wed Oct 09, 2013 10:22 pm

Hi guys,

Unfortunately trying out with this new company hasn't worked out so I'm currently looking for another job,

The tablets seem to be taking time to set in, in the meantime I am still struggling on I'm even struggling to get in and out of the bath on some days I've never felt so fed up than I have done these last few weeks

I feel like I'm losing it and same with my balance but feel like no-one that is close to me understands properly my other half told me the other day that when I don't complain about the pain I'm in he presumes that I'm ok and should carry on doing the housework etc

I told him just because I don't mention the pain doesn't mean I'm not in pain
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Re: Don't know what to do

Postby denys » Wed Oct 09, 2013 11:54 pm

Unfortunately the meds can take several weeks to kick in, which doesnt help in the sort term I know, have you tried hot water bottles on the worst bits. Or if you have a tens machine that may help a little, the other thing is to pace yourself and rest up as much as possible and try not to worry as stress will make everything worse :-D :-D :-D
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Re: Don't know what to do

Postby Rachellou » Fri Oct 11, 2013 6:39 am

I can't believe some doctors, so I was in extreme pain yesterday, my original doctor was no in the office so I had to see another one...

It got to the point that I couldn't walk without crying, I had to hold on to whatever was stable enough to get about even sitting and laying down was hurting then I went to have a bath because they help and I couldn't get out without a few attempts so I decided to go to the doctors for stronger painkillers that the over counter ones...

So went to see this doctor and he wouldn't do anything for me, no support no painkillers it was like getting blood out of a stone then he says to me to make an appointment with my original doctor because he couldn't understand why I had been put on a stronger dose of Pregabalin I think it was my memory is rubbish at the mo...

I was so angry that he eventually gave me some Anti-inflammatory and I think that's just so I would leave the office, I don't know if they will work ....
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