So fed up and frustrated

[Kellyybearr]

I have just been to the doctors as my flare ups are becoming more and more frequent and since being diagnosed have not really had any real treatment plan. I am now sitting at home in tears as they have basically implied it’s all in my head, coming off all my tablets was there solution and was told to just “look after myself” and “stay positive”. All of this after he stated that if I continued needing time off from work I’d probably loose my job and not being able to work was probably eminent. I am 28 years old and I want to have a semi-normal life. I do not want this illness to take everything from me. I just want a doctor who semi-understands and wants to help. I want to continue working to the best of my ability but right now after that single appointment I just feel so deflated and helpless. I just don’t know what to do anymore!

[Hazel_Angelstar Administrator FMA UK Staff]

Sorry to hear you are struggling so much at the moment, and from the sounds on things not getting much support from your gp.

Unfortunately, some people with fibro are not able to take meds or don't get any benefit from them - it sums like the meds you are on are not helping much - and this may be why your gp is suggesting coming off meds.

Do your employers know you have fibro? Have they considered any reasonable adjustments that could be made which might help you to be able to do easier at work.

You might find it useful to look into whether there's a pain management course locally you can attend (or a chronic health self management course). These can help you learn ways of dealing and coping with your symptoms and not just depending on medication to help.

Things like pacing, meditation, relaxation, distraction, heat /cold etc are all this that can help xxx

[Kellyybearr in reply to Hazel_Angelstar]

My medication was working, and to a degree still is, my flare ups are just way more frequent than ever (I have only been diagnosed for a year). My work are aware that I have fibro and I have all the appropriate DSE equipment but they aren’t willing to do much else. I just love working and the idea of loosing it upsets me. I have done pain management seminars and I am putting everything I have learnt from them into place. I only went as I have been on the same medication since I have been disagnosed and then just left and I figured there must be something else to try.

[Hazel_Angelstar Administrator FMA UK Staff in reply to Kellyybearr]

If medication is helping (with fibro medication may help take edge of pain but not necessarily take it all away) then I would be asking gp why they want to take it off you.

Depending on what meds you are on, then their may be other ones that you can try. Is there a different gp in the surgery you can see?

It sounds like you are doing all the right things... And I completely understand how frustrating that can be when you are doing it all but still struggling xxx

[Kellyybearr in reply to Hazel_Angelstar]

His words were “more medication won’t help, less is better so I’d say come off the mess”. He doesn’t really seem to have a clue if I’m honest. I have seen two different GPs and the surgery and they both are as useless as the other.

I’m currently on Pregablin for the pain and mitazipine which is obviously an anti depressant and I know upon doing my research there’s a few different concoctions that people are on. I just know I am feeling very stuck and unsupported and I just don’t know the best next step to take.

[Hazel_Angelstar Administrator FMA UK Staff in reply to Kellyybearr]

That's the same combination I am on ... I also take tramadol & Paracetamol to help with pain.

The attitude of your gp is frustrating but one that is becoming more common unfortunately 😩😩😩

[Tory]

The trouble is all we hear is about getting addicted to the drugs. With the chronic pain we suffer it’s not like a one off injury etc. I wish there was more specialised help for us.

[bourne]

Hi glad you have found this sight it is very helpful with people like us. OK you are very low at this time so one you are doing the right thing to vent here. When ready I'd complain to your practice manager and ask for a different gp who understands fibro . Try a find a fibro group near you for help support and human contact this will help and when you r ready ask for cbt if not available at surgery they can refer you don't b frightened of this it will help take care angel xx

[Hidden]

I’d also suggest CBD oil to help with the worst pain.

I go on the theory that no one thing will stop the pain 100% so if I can find a few things that cut it by 10-20% and out them together, I might get some relief.

I use Salonpas patches, Perskindol cream, freeze spray, hot water bottles, Epsom salts, magnesium spray, a tens machine. I’m not saying use all these together but sometimes an extra 2 or 3 on top of your medication will help.

If your GP tries to stop pain meds take an advocate to the appointment with you and a simple statement like “ denying me pain relief when I am in pain might contradict NICE guidelines” ( you’d have to research this to get the right phrase) might put him/her in their place.

[Dinkie]

Don't know whether you are in UK or can get to Guy's and St. Thomas's fibro clinic but they may be able to help. If you can write to your GP and ask for a referral. If they have it in writing they are less likely to refuse! It's a one appointment only but the appointment offers different consultants. I saw psychologist, rheumatolgist and physio. They wrote a plan of action to my GP and hey presto - years of ignoring me I had the recommendations from the experts and the GP had no option than to refer locally Good luck

[Kellyybearr]

Hi, thanks for this. I’m in the UK but based in Norfolk so is this something they would still refer me too? If so then I’ll try anything!

[ShelWhitt in reply to Kellyybearr]

Hate to be despondent but after 40 years of trying just about anything and everything - side effects worse than pain, etc. and spending a small fortune, nothing has really helped, and my problems have got steadily worse. Now I have ditched pretty much all medication apart from paracetamol at night and levothyroxine which i need to take, and try to pace myself, rest as much as I can, grit my teeth and do what I can when I can. My best friend is my hot water bottle. Bring on a cure. Take care everyone.x