Diagnosed with Fibromyalgia and Hyper... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Diagnosed with Fibromyalgia and Hypermobility

EmilyGemini profile image
EmilyGemini

Hey, I've just been diagnosed with Fibromyalgia and Hypermobility a couple of weeks ago after years of tests and appointments with the GP to find out why I was constantly tired and in pain. I'm asking for a bit of advice in regards to Fibromyalgia as I don't fully understand what it is and what I can do to help me from now on. My job is quite physical and causes a lot of flare ups, the specialist advised that I should maybe reconsider my position but my work place don't fully understand fibromyalgia either and potentially looking into redeployment for me. I've been put on amitriptyline to see if that will help and I'm off work whilst it gets into my system. A couple of weeks into the medication and I don't feel like it's helping enough

. Do I go back to work and just not take it or wait to see if I get redeployment and see if that helps. Any advice would be much appreciated. Thank you!

24 Replies

Hey Hun,

Sorry can I clarify first what you do for a job? Xxx

Hey, I work for the ambulance service 😊 x

What an amazing job that's incredible! Do you know where they would be hoping to redeploy you to? I can understand you probably love your job and don't want to give it up, but your Health needs to be one of your main priorities! I think you need to speak to your doctor about coming off the tablets and maybe taking something else? Could you do a different role whilst you manage to get the pain under control? Xxx

Thank you and they were looking at maybe admin or an office job because it would be less physical. I've booked in my with gp to see about the medication and whether I can go back 😊. Xxx

Would you be okay with moving to that role or is that an awful choice for you? Good idea, I would advise to write a list of all your symptoms and pain and take them with you - you can then try and get medications that will help with as many of them as possible! xxxx

Thank you for the advice and it wouldn't be a problem is I was to be redeployed just ashame that's all xxx

Why ashamed hun? xxx

Just wasn't expecting to be told that I have to start thinking about best options and ways to obviously reduce the amount of pain that I'm in and I know with it being a physical job that I do suffer with it but I just wish that I could understand fibromyalgia more xxx

I completely understand what you mean! I was working in hospitality when I got ill, and I couldn't believe that something so massive had happened to me and was going to have this massive ripple effect all of a sudden! Unfortunately, Fibro is an illness that at the moment people don't know a lot about - causes etc. But as you get use to having it and have had it for longer than you will start to understand more about your own case xxx

Thank you very much DanielleGemma! Xx

No problem at all, if there is anything I can do to help please let me know xxx

Dizzytwo profile image
DizzytwoModerator

Hi there EmilyGemini it's very nice to meet you and wish you a warm welcome to our group. The medication could take up to 6 weeks before you start to feel the effects if any at all. If you don't feel any different by then I would suggest you talk it over with your GP. Also ask what other medications for the pain etc they would recommend. I am not saying they will work but there are meds out there the GP could give you to try.

Maybe you would like to take a peek at our mother site it has a wealth of information you may find useful fmauk.org please have a nice day xx

Mo

EmilyGemini profile image
EmilyGemini in reply to Dizzytwo

Thank you very much for your advice and I've been advised to be off work whilst I try this amitriptyline but I don't know how much longer I need to be off work especially when I don't know whether I am going to be redeployed or back to my job. Once again thanks xx

Hi! Thank you, I would really appreciate that! I've been started on amitriptyline but apart from it helping me with sleep I don't feel like it's helping with the pain so I wonder whether or not medication is good to help or something else?

I'm only on 20mg and have been on them for 2 weeks. I don't have a follow up with my specialist until the end of November but my actually gp hasn't done anything except prescribed me amitriptyline

Yes I do take it at night and thank you, I shall look into that!

Hi Emily, it is difficult when you have to change or give your job because of fibro (especially if you love it as well). I stopped working last year because I just kept pushing on through the pain and exhaustion but ended up getting to a point where I was on the verge of both physical and mental breakdown. In hindsight I wish I had adjusted my situation sooner as I may not have got to the point where I had to stop work completely. I can imagine your job is both physically and emotionally challenging so being in pain whilst doing it must be a nightmare. The trouble with fibro though is that there is no blanket approach that works for all sufferers. The symptoms are so varied and affect people differently so each person's treatment plan is different depending on what works for them. I was like you when I was diagnosed as I had previously never heard of it so knew next to nothing. My suggestion is to research as much as you can yourself (the FMAUK website is not a bad place to start) and discuss with your GP what options are available to you, ie not just meds but any therapies, pain clinics etc. It is a case of suck it and see and to find out what helps you most.

But in the meantime, welcome to the forum lovely, I am sure you will find it as friendly and supportive as me. x

(P.S. Just a little word to the wise, if you lock your posts, it is likely you will get more replies as a lot of members aren't keen on responding to unlocked ones, but that's up to you of course x)

.

EmilyGemini profile image
EmilyGemini in reply to Ramjets

Thank you for the advice on the locking posts and welcoming me to the community. It seems to be helping alot hearing other people's stories and how they cope. My GP isn't really helping me with knowledge on fibromyalgia and I'm currently off sick but my job want to do redeployment if I can't continue to forfill my post but the GP is saying that if im okay with these meds then I should be fine to go back but if I go back and I'm okay now but not forever and I go off sick again, will they redeploy me if I've been seen to do that job again?

Ramjets profile image
Ramjets in reply to EmilyGemini

It is a dilemma as it's hard to predict how the fibro will continue to affect you even with medication. And then sometimes the meds can have side effects that could interfere with your ability to do the job. You can't really make a decision based on other people's experience as it is so unique to all of us. It's a shame your GP is not more knowledgeable about fibro - have you checked your practices's website to see if any other docs there have a special interest in this area so you could switch to them? Having a knowledgeable and supportive GP can make all the difference. x

EmilyGemini profile image
EmilyGemini in reply to Ramjets

This is why I feel like I'm in a sticky situation in regards to work because I'm fine for periods of time and then I really struggle because my job does take it out of me. I shall look into my gp practice a bit more thank you

Ramjets profile image
Ramjets in reply to EmilyGemini

Good luck, I know you have a difficult decision to make, just try and get as much information as you can but also listen to what your body is telling you. You will get lots of support on here too. Take care hun. xxx

BeezyB profile image
BeezyB in reply to EmilyGemini

Eventually your body FORCES you to PACE YOURSELF! Read up on the Spoon Theory on Google...it will help you understand your new pace. I have a very physical job too PLUS have hypermobile/ EDS 3 also & you need to realize your EDS is most likely causing a great deal of your pain as well. Read..Educate yourself...Doctors don't understand because they can't FEEL it. You must be your own BEST advocate if you want results & to feel better.

Meds won't help you until you quit using up all your spoons!! Just my experience...quit fighting YOURSELF... Best wishes

aliD47 profile image
aliD47 in reply to BeezyB

I'm learning this myself. I have eds but suspect fibro also. Having tired to go to work in a physically demanding job. I quickly realised that I can't do it anymore. I'm currently off sick and figgering out where my new normal will be.

When I did go to work I had so many restrictions placed on me that I couldn't do my job effectively anyway and I was just a body in the room. I found it difficult to deal with being a proactive doer to doing hardly anything in my job. I felt they were watching me to fail at something so they would then say the situation isn't working. They kindly reduced my hours for me. But I know that it wouldn't be permanent as I would have liked so they would have got rid of me anyway. So I'm off sick till I figger all this out. It's best for my health and well being at the end of the day. I will get back into a new form of employment once I've had time learn to deal with all this

BeezyB profile image
BeezyB in reply to aliD47

Wishing you the best. You're not alone.....

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