Please say help gets better - Fibromyalgia Acti...

Fibromyalgia Action UK

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Please say help gets better

TBards profile image
35 Replies

I have been suffering with pain all over my body for 3 years and the pandemic hasn't helped things. My doctor and specialist keep passing me from pillar to post. Its like nobody is taking me serious. Are you all struggling the same? I did speak to my neurologist recently and he thinks I have fibromyalgia and now i have to wait to see another specialist as he made it very clear he wasnt interested as all he wants to deal with is possible carpal tunnel and neuropathy in my legs. Im taking Dihydrocodeine 2 tablets twice a day and pregabalin 1 tablet twice a day. They were easing the pain but due to taking them for so long they dont have the same effect and they wont give me anything stronger because of my anti depressants. I get so upset and frustrated and feel like my doctors and specialists dont believe me. I wish they would come round to my house to see how much pain I'm in.. please tell me things get easier because I cant put up with this for much longer and its really affecting my mental health and fear I'm going back to the dark place I was in in December 2018. Im at my wits end with it all

35 Replies
Yassytina profile image
YassytinaFMA UK Volunteer

Morning, is it a rheumatologist they have booked you to see these are the specialist that normally will diagnose fibro, ? So I am hoping this is the case for you, go back to your doctor and say I’m in a place now with my health that Im beyond struggling with pain , can he/she look at your meds again and possibly try something that can work better for you until this appointment comes , there might be able to tweak the meds and possibly chase the appointment as well, they have a duty of care , don’t let them fob you off, perhaps take a close members of your family with you for support if possible . We all need to be heard and someone supporting us as well , do you live with someone ? or have someone to lean on x

TBards profile image
TBards in reply to Yassytina

Thank you. He didnt say who he was referring me to as he was very dismissive regarding the pain I was telling him about. I was fuming when I left him as this is the third person I have been in contact with over the last 3 years. Its like nobody is taking things seriously and they hope I will go away. I will write a letter to my surgery and I might have to take a hit on my anti depression tablets

in reply to TBards

Hello! As a suffer of FM myself, I know exactly how you feel. Its pretty common from my own experience and from talking with other people with Fibro, is that it can take time finding the right GP that is willing to listen and understand your issue.

For example, it took me over 3 years before I found a GP willing to refer me to a rheumatologist, so my advice to you if you're not getting anywhere with the GPs at your current surgery, would be to perhaps consider what I did. I had no choice but to move surgeries three times and from there, I was referred to pain management and rheumatology, therefore resulting in my diagnosis.

Hopefully it won't take as many change of surgeries and GPs before you find a GP that is clued up about Fibromyalgia.

You mentioned writing a letter to the surgery and this can sometimes be a good tactic, as you can put all your frustration points and issues down on one letter. Hopefully someone will take note of what you have put and action the points you raise. Just be prepared for potential disappointment if the doctors at the surgery have already been of no use, it might be time for a switch.

Please let me know if you need any more advice.

Cheers,

Rich

TBards profile image
TBards in reply to

Thank you Rich, I don't really have a regular doctor. The medical group has 3 different surgeries and sometimes I may get an appointment, but it could be further away from home. At one of those surgeries I got a female doctor who totally got how I feel but next time it maybe someone different. But directing a letter to her may be a starting point. I had a breakdown at the beginning of 2020 and was off work for 3 months and my mental health is struggling. And I'm caught in a predicament,anti depressents takes a hit as to increase pain killers . I'm totally fed up with it all.

Cat00 profile image
Cat00 in reply to TBards

Are you saying the anti-depressants are making your painkillers not work?

TBards profile image
TBards in reply to Cat00

No the painkillers are less effective but they won't give me anything stronger because of the anti depressants I'm on as it could cause issues with my liver. So I'm going to ask if my anti depressents can be reduced so I can hopefully get a stronger painkiller

Cat00 profile image
Cat00 in reply to TBards

ahhh our poor livers!

in reply to TBards

Hey,

I know how you feel when you say you're fed up of it all. I lost my management job a few years back due to my deteriorating physical and mental health caused by fibromyalgia, which was getting worse not better as time went on. I lost everything in my life, my job, car, home and relationship and was done with everything as the medications were not helping either.

However, please know that it will get better for you and not to lose hope. Everyone who is suffering with fibro has most likely felt how you feel right now, myself included. Perceiver with the GPs, compose and send the letter you have mentioned and just keep hammering them until you get the right person to help you.

That is one thing I learned from being passed from person to person in the early stages of my illness, and I just though this was how it was suppose to be with GPs dismissing me either due to being uneducated about fibromyalgia, or they simply don't believe that my pain is as bad as it is. However over time, I have developed a very stern attitude towards healthcare professionals, be it a neurologist or GPs, I arm myself with all I need to discuss with them in advance on my tablet/phone so I don't forget anything. I don't finish the call/appointment until I am at least somewhat happy with what they are saying, without making sure I'm not being unreasonable or too demanding.

In short, Makie-Uppie below has given the right guidance in that you should get another appointment with your GP, but as I mentioned be armed with what you need to discuss either in your head, or write it down. You could try as Makie-Uppie is suggesting and point them to some fibromyalgia resources though I would be very surprised if you would find a GP that is willing to visit a message board style site like this and read the info contained within. From my experience, GPs don't like being told what to do, even if its a nudge in a certain direction. No idea why.

All the best,

Rich

TBards profile image
TBards in reply to

God how awful for you losing everything. The neurologist I saw the other week totally dismissed my issues and what annoys me is that he said you work and drive a moped. I have no choice but to work. I will arm myself with everything when I compose a letter later as I'm off today

Trappedmoth profile image
Trappedmoth in reply to

If I want any of my doctors to know something, I find an academic paper on the internet and print it out. Most doctors don't have time to read everything and, as long as the publication is legitimate, they will consider it and possibly take you more seriously. Anyway that has been my experience. Try to understand why your doctors don't seem to be taking you seriously. I also had that problem. The doctors assumed that because I am relatively mobile that meant that I couldn't be in pain. However, I have or had, hypermobility. When I pointed this out explicitly, the penny dropped.

Makie-Uppie profile image
Makie-Uppie in reply to TBards

Arrange an appointment with your medical professional, take a laptop, tablet or smart phone with you. Alternatively give them the address of this site. What ever way you do it tell them to read up and educate themselves. These dismissive people really bug me.

Drhook profile image
Drhook in reply to TBards

Hi , I have had fibromyalgia for over 20 yrs I like yourself wanted answers! Now I look after myself stopped most of the drugs now only on escitalpram antidepressants in a morning and nortripyline at bedtime. Not that I have depression but to relax me, I know what depression is been in hospital with over dose twice years back, the thing is you have to pace yourself, be kind to yourself, I do stretching excise before bed, begin each day with the thought what hurts the most! It's not an illness its a condition and it can go as quickly as it came, brought on by trauma. Read help books, look on Pinterest there are lots of information on there. Try not to stress to much, it's not your fault its the silly pain receptors in your brain that react to much! Ask your doctor for morphine patches and see how u go!. Take care

TBards profile image
TBards in reply to Drhook

It all started 3 years ago when I fell off a ladder and landed on my back and broke a bone in my spine . I was very lucky and one of the doctors have said this could be the trauma that set it off then the pandemic hit and stopped all face to face so I'm playing catch up now. So sorry to hear your story and thanks

Trappedmoth profile image
Trappedmoth in reply to TBards

If I were you I would start looking for a new GP immediately. It has been my experience in recent years that the medical profession is catching up with the science and mostly accepts that fibromyalgia - and chronic pain in general - is real. But very difficult to treat, as you will learn if you read this webpage on a regular basis.

Arymretep profile image
Arymretep

I agree about changing Drs, I’ve had a really bad flare up this year and my usual Dr who was then Ive been seeing for years suddenly decided he couldn’t treat me any more , firstly I had an appointment and the surgery said he was off sick and put me down to see another dr, fair enough, but then I made another appointment late on to see him and he did the same thing again, so I decided to stay with the other dr, who seems to know more about fibro, so sometimes it’s a good thing to change Drs👍

I take antidepressants which are supposed to help with fybro pain , and painkillers

TBards profile image
TBards in reply to Arymretep

Thank you

TBards, I am so sorry you're suffering. I had a similar experience before diagnosis. Yes, it does get better, hang in there. With doctors I found it helpful to go with at most three major problems. I also learnt to speak calmly. I also kept a diary of the pains. Read about my situation and asked questions politely. But in the end it was me who learnt to handle my pain by looking at patterns. What I could not beat I looked at how I do not exercerbate it. In the end I weaned myself off most medication (doctors can throw a lot of medication at you and then you start dealing with side effects with more meds) but still live with minimal pain here and there and ofcourse I ran back to medication when pain is unbearable. Have a good day.

TBards profile image
TBards in reply to

Thank you

Drhook profile image
Drhook in reply to

I did the same, I try to control the condition like yourself, gentle stretching at bedtime helps me relax ! Gentle hug sent!

TBards profile image
TBards in reply to Drhook

Thank you You've all been very helpful

Roo1972 profile image
Roo1972

That's my experience all over. I've now found a GP who listens and I've insisted that I see her each time (NICE guidelines are for chronic illness you should have a single clinician due to its complexity). I self-funded my rheumatology appt (£200) but I know I was fortunate to be able to afford to do so. It's not in our nature & is time consuming but I'm afraid I've found the only way to get heard is to be a pain in the ass. Politely of course but just keep putting in the requests. As I told my GP "stop treating me as a problem patient. I am a patient with a problem that we haven't yet got on top of". GPs are under huge strain right now so it is very difficult (worse than ever) to get movement but at the same time, living in pain is so awful it's not something that can just wait a few months.

TBards profile image
TBards in reply to Roo1972

Thank you

Little08 profile image
Little08

So sorry to hear you're struggling. Unfortunately it is very difficult to treat fibro as there are no cures for it. Presumably your anti depressants are to boost your serotonin levels if not look into it as low serotonin is one of the triggers for fibro. You will get good days and bad days. The aim is to enjoy the good days to boost you for the bad days. When it is bad give in to it and rest if you can. Hope this helps. R

TBards profile image
TBards

Thank you

Spider1 profile image
Spider1

Hi Hun,PLEASE consider having some counselling.

I know it won’t take the Fibromyalgia away BUT somebody will listen and more importantly HEAR what you are saying.

It’s a good place to start small goals from.

Sending loads of hugs to you as a fellow sufferer.

Xxxxxx

TBards profile image
TBards in reply to Spider1

Thank you so much. You have all given me the courage to challenge my doctors and stop being fobbed off and passed from pillar to post. Thank you xxx

Trappedmoth profile image
Trappedmoth in reply to Spider1

A very good idea. Ideally see a psychiatrist or psychologist specialising in chronic pain management. I am seeing someone privately and she is great. However you should be able to get some treatment from the nhs. That's a good place to start.

Banditqueen profile image
Banditqueen

Hi TBards, you have a right to know who they have ref you to and they should be able to tell you. Insist on seeing another doc or move surgery. Write to them about the pain and insist on a medication review. Make an appointment for one. You can also do one at a local pharmacy and take the recommended treatment to the surgery. Make a complaint to the manager or complaint person. Find out on line how to complain about the doctor.

Hopefully its a rheumatology specialist. By the way, you can take progabalon three times a day, so ask about that. Its terrible that you are feeling this way.

If this is affecting your mental health then ask about the services for your mental illness as well and maybe they can look at what might help. I don't know where you are living but here the world is officially normal again so they should sort you out. If you feel like screaming do, but try not to do it to them as they are rather sensitive beings with no understanding of our frustration. Coming here is a great first step.

I am not in a fit state to help much as am on high dose of codeine in addition to my other rubbish as had a recent fall. So my mind is a soup.

Hope you get the rest and help you need. Don't let them get you down. Take a friend or use advocacy and tell them what you want. Its your right.

Cheers and good luck.

TBards profile image
TBards in reply to Banditqueen

Thank you very much. I need to be a bit more assertive rather than just getting fobbed off

looloo4007 profile image
looloo4007

Hi there , Have you tried amitriptyline it helps u sleep through night which in turn helps you feel better .

TBards profile image
TBards in reply to looloo4007

I haven't, I will see what happens when I send a letter to them

SusieSquirrel profile image
SusieSquirrel

Hi TBards, you could say to doctor that you want referred to a pain clinic & see a rheumatologist.I had to ask for a referral. I am on dihydracodeine, 600mg pregablin and 100mg of sertraline.

You have to push and push but stand your ground. Good luck

TBards profile image
TBards in reply to SusieSquirrel

I've done the pain clinic route it wasn't very good and they have the cheek to say its all in your mind. It annoyed me when they say that, they want too be in this body for a week and tell me then, is it all in my mind

SusieSquirrel profile image
SusieSquirrel in reply to TBards

I said to woman the exact same thing...try being in my body for a week and you'll know mindfulness is bull$%£$. But a friend of mine got a pain clinic app at a hospital which was totally different. She got offered sports massage, acupuncture etc. My pain clinic did sort out my medication by contacting doctor who then took their advice and changed my meds but I had to have a medication review through pain clinic

TBards profile image
TBards

I'm on the same as you, and on mitrazapine also

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