I was diagnosed with fibro right at the start of lockdown and have been pretty much left to it ever since. I was given some pain relief meds in the beginning but the doctor I've had to speak to the last two times I've called has been incredibly unhelpful and left me in tears feeling totally hopeless. Today he said "pain medication won't help with that anyway" and that there was "nothing else I can do because it's just fibromyalgia". I don't want to be on pain medication in the long term but I told him today that my current pain is unmanageable and that I really don't know what to do. I'm a teacher and a mum to a toddler, so I have got to be able to keep going through it all and just feel like I have no support from him. My husband is wonderful but there's only so much he can do to help!
Has anybody got any advice with regards to what I can do next? It's impacting on my mental health and I'm not managing my symptoms at all well. Feeling at a total loss and feel so helpless, exhausted and fed up. Desperately want to get on top of things right now but have no support from the GP in doing so!
Thank you x
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I know this is a dreadful condition as there is no end to pain even with medication aside from side effects.
I use magnesium oil spray and cbd oil both of which you can get from H& B but the effect is not that great for me. Physio and going to gym produced a better result but I cannot do any of that at the moment.
I think I just rest before I get tired and pacing is key to all we do.
If you hear our stories here we are kind of ...
You could also ask your employer to make a reasonable adjustment.
Having a supportive GP is essential when you have fibromyalgia. Is there another GP within the surgery you could speak to? If not, I would be thinking of changing surgeries. xx
Hi there, it makes me so mad to hear that a supposed Dr treats a patient like this.
I would phone the surgery tomorrow, be composed, and try not to cry. Just say “ it’s unacceptable the way you’ve been treated, and you wish to speak to a Dr who understands, and knows how to treat a patient with a chronic pain condition, in order to allow you to get your pain under control, so that you can look after your child, and cope with your job as a teacher”. Don’t be fobbed off, if you’re still not happy, ask to speak to the Practice Manager and tell them of your experience.
I know that the NHS is under stress just now, but so are we the patients. When you get to see/speak to a Dr ask for a Treatment Plan to be drawn up so you and your Dr can work together to get your Fibro under control. That way it lets your Dr know that you want more that just pain meds.
There is a lot more that can be offered, Physio, Hydrotherapy, Pain Management Courses, Mindfulness Courses, of course not immediately because of COVID-19, but your name can go on the waiting list. Ask to be prescribed something to get you through this period, but be warned, with a toddler and your job, it would need to be something that doesn’t make you drowsy.
There is no magic pill unfortunately that will take the pain away completely, but Fibromyalgia can be managed by all of the above, along with healthy eating, pacing yourself by not overdoing things then crashing, warm baths with Epsom Salts added, heat/cold pads, Tens machine. Keep a pain diary, to see if there is a pattern of pain at certain times.
Be brave, the first time being assertive with a member of the Medical Profession is the worst.
Referral to Rheumatology and pain clinic is best action but obviously long waits post co vid or could just ask to start on some Amitryptilline at night just 10mgs it will help you get to the repair stage of sleep. Take it about 7.30 pm so don't get hung over feeling in morning.
Although Gp is a little unsympathetic most medical stuff says painkillers won't help but everyone is different. Sometimes underlying problems are helped by pain meds especially NSAIDs if can take but ensure protect stomach against ulcers. Try and pace yourself do a task for 20 mins then rest. Everything takes longer but you feel better.
Morning, I would differently seek out a different doctor, unfortunately we still read here of doctors that have no empathy for their fibro patients, there are some good ones out there it’s just finding me that’s supportive, very hard having a job and alittle one, pacing and resting as much as you can in between(hard I know) take any offers of grandparents, siblings having little one to give you a break, they will enjoy their time together and you can switch off. Keep pushing until your satisfied with the rights pain meds often trials and errors, good forum here and lots of support/empathy. Xx
The first thing I would do is change gp and ask for one that understands fibromyalgia.It is trial and error regarding meds as what works for some won't for others.I am still trying different meds to get the pain under control.I find trying to rest when ever you you can also helps.Take care x
I am waiting to see a rheumatologist now or will be when things more settled with covid , after being under the care of a neurologist for over a year . I was referred to her colleague as I didn’t fit the ms criteria as I have widespread tingling and numbness and dreadful pains in my legs she felt I have fibromyalgia, which is why I felt compelled to tell you my experience in taking amitriptyline. I started taking 10mg at night similar to another reply you’ve had
On the advice of my dr well over a year ago now I have since increased up to 20mg and I can honestly say I really find it marvellous
At first it made me very sleepy and drowsy but taking it at 7.30 pm every night by 9.30 - 10 I’m ready for bed and sleep so much better . The very drowsy feeling really improved after a couple of weeks so glad I stuck with it , but like you the pain was dreadful and so tiring in itself .
I’m like you just on my journey to discover about Fibromyalgia as I don’t know much about it , but so pleased to have found this site to learn things from others experiences
Hi, sounds like you need to see a different Doctor. When I was disgnosed my Doctor openly said she knows absolutely nothing about fibro, but she has been working with me to find the right dosage of medication. It is trial and error on my part and taking months to see what works and what doesn’t.
Keeping a diary is helpful and if you see a different dr, ask to see a Rheumatologist, as he will be able to put you on a programme that may help.
I hope you will be able to see a more supportive doctor soon that can help.
Hello there. I just read your post and can really relate to how you are feeling. I am so sorry that you feel let down and unsupported by your GP as he / she should be the one to sign post you to local support to manage your symptoms. I was only diagnosed 10 months ago and understand the overwhelming feelings of despair this illness brings. I have found that emotional stress exacerbates the symptoms of pain, fatigue and mental well being and your role as a teacher and having a small child are such triggers I am sure. Can I suggest you ask to see / talk to another GP at the practice you are registered at, perhaps a GP you have seen before and have confidence in or one someone you trust can recommend? This is your right. Your surgery should have a contact number for a local wellbeing centre you can contact for support with mental health issues - cognitive behavioural therapy (CBT) was suggested to me and I am waiting to start this (it has helped me before with another issue years ago). I was also given an appointment at a local community hospital where hospital volunteers have information for fibro sufferers, I am about to start tai chi classes as gentle exercise is supposed to help. Perhaps research and reach out to any service like this in a community hospital close to you, I am sure there will be something. Lock down has delayed everything, of course, which isn’t helpful. I am presently off work as I got to the point of not being able to cope and I have come to learn that I have to accept that I need to slow down and be a bit kinder to myself - accept that you may need to do less in a day to prevent the burn out cycle. Those unimportant jobs can wait. This fibro is now our life and it can make us miserable. I hope you find the support you need. For what it is worth, you are not alone and I for one feel your desperation, it must be so difficult for you. There is help available and there are health care workers who will listen and support you. X
I am not surprised by your doctors reaction, it seems common - they were like it with me. I do not go to the doctors anymore and so much better for it. My fibro used to be terrible and I am pleased to say its not like it was. If you believe what your GP says then that will cause you a hugh amount of stress, making things so much worse.
What I would recommend is reading Dr Leon Chaitow book on Muscle pain and fibro, its amazing and has helped me greatly. If you want info on how wrong doctors can be I would suggest Dr Vernon Colemans website or books
It’s true I’m afraid, there is no pain medication that helps and doctors have no clue and are very unhelpful. Accepting and getting understanding from fellow sufferers should hopefully help you through this but depression ( I’ve found ) goes hand in hand with fibromyalgia, so please tell your doctor if things get really bad.
I’m so sorry to hear of your experiences and I agree with a lot of what the other posters have said about speaking to your practice and changing gps.
As a fellow teacher and senior leader, I fully understand how hard you must be finding your job. I also know that pacing yourself is very hard to do in a job that is all go from 8.45-5. I thought I’d share some little things that help me through the day with pain and fatigue as I can’t take my medication during working hours as they make me drowsy.
I take to work a microwaveable rice heat pack: it can be taken into the classroom as it’s not a danger to the children. I have it on my chair to help with pain during lessons, I take a hot water bottle for lunch times to help and the heat is more intense than the heat pack. Heat works wonders for taking the stiffness away. At my desk I have a wrist support for my keyboard and a decent chair ( ask HR). As for the fibro-fog, that can be a hard one but I make very comprehensive whiteboard notebooks so it basically carries me through the lesson on a bad day, I try to make light of the situation with the children - can they guess my missing word? I’m being a silly sausage today and I’ll need their help. At the moment I have y1 so 5-6 year olds and they are excellent at this. Further up, I’ve been a bit more direct with the children but again it’s a game. They love to help. Tiredness - I try to avoid caffeine as previously I would have drank so much to keep going. If I’m more than normal tired then I take the time off - could be a day, could be a week. Speaking to SLT and HR was a massive help. It’s taken time for them to understand but they usually see the gradually decline and a rest period needed.
Diet changes such as cutting gluten, diary and things like sweet etc have helped too. I feel less bloated etc and sluggish. Morrison’s are fabulous for free from foods at a reasonable price.
And lastly don’t take work home, If it doesn’t get done then it doesn’t get done. Prioritise each day. You never know you might help with work load issues at school. Seeing what I’ve been able to cut out without it impacting the job, has enabled us as school to lessen other people’s work load.
Thank you so much. I will start taking in a heat pack. I have yuyu bottles at home (they're really long hot water bottles) which are honestly magic, so using heat at work too is a great idea.
I plan lessons to run smoothly however my brain is doing that day, too! The children are definitely keen to be helpful which is wonderful. I went back from maternity leave part time, and honestly not sure I'd be able to do more than that right now so I'm glad we're lucky enough for me to be able to do that. I'm waiting for an appointment with HR when things get a little more normal - I'm not sure when it'll happen yet but thank you for the tips for that meeting. I love my job and want to do it well, so accessing support to do so will be really helpful. I'm awful at taking time off - I hate calling in sick. I need to learn when it's really necessary and do it so I can still do my job both at work as a teacher and at home as a mum. I have felt as though I'm doing neither as well as I should for some time, so there's some adjusting and learning about myself to do there I think.
I'm going to have a go at changing my diet. I'm not a caffeine person anyway as it's always given me migraines, but I definitely think gluten can make me feel sluggish as you say. I'll definitely try Morrisons, thank you.
As for speaking to a different GP - I am building up to it. I want to, but I find speaking to any doctor makes me feel really anxious anyway, so to be "shot down" when looking for support will mean it might take me some time to get there again. I think there's an element of me needing some time to adjust to the diagnosis and accept the 'new me' not being who I expected to be I suppose. I want to speak to a GP about the impact it's having on my mental health, but think I'll request a female doctor for that conversation this time. It's really good to know that somebody else is managing our work alongside symptoms of fibromyalgia more successfully - I will learn not to burnout so frequently too, I hope!
Great that you are waiting for HR. They have a duty of care for you as well as the children. Make a list of what you need help with to do your job. They’ll appreciate that you want to try and will be more understanding when time off is needed. As for time off, I hear you... I was awful at it. My husband has actually hidden my car keys and laptop previously to stop me going in
I’ve been where you are with the GP. I was once told my mattress was the problem for my aches. I wanted to know how he knew how my mattress felt?! I walked home in tears.
Following that, I made a chronological of my symptoms and took my husband with me when I next plucked up the courage to raise it again but it was almost a year later. The list helped to keep the conversation on track and having my husband there helped when I felt overwhelmed and he was able to jump in.
It definitely has taken time to get used to the ‘new me’. I have days were I most definitely ‘mourn’ who I was previously. However, I’ve started to see that slowing down has allowed me to embrace - a new hobby, a love for audiobooks (when my eyes don’t focus). Pick a positive each day, no matter how small- sometimes I celebrate being able to put my own socks on.
I wish you all the luck in the world finding your ‘new you’. I’m sure even at half speed on a bad day, you are still an incredible teacher and mother. You obviously care so much about both.
Yes, I think we can all relate to your feelings of helplessness. I’m afraid my experience of gps has been that most are very disinterested if you have Fibro myalgia. I have struggled for many years to get referals, and failed.the drugs(Amitriptyline, Nortriptilyne, Carbamezapine, Citalopram etc etc, ) may help sleep but have little or no effect On symptoms,for me.
I would certainly endorse an earlier reply regarding the use of Epsom salt baths but I’ve not tried magnesium spray as I’ve seen lots of people on here and elsewhere saying that it hasn’t helped them.But, for three months or so, I have use magnesium malate supplement (just over half teaspoon of the powder in water before bed) and have found that I sleep much much better than I have for years. This, I would suggest, may be worth trying. But, excercise /staying active, is very very important.a struggle, but so important. I am missing my twice weekly swims and struggling to walk/ cycle to keep active during lockdown but this is almost impossible due to leg/ foot/ ankle pain and swelling. When lockdown is over, I would suggest you try to find a pool where the water isn’t too cold and try to swim regularly.
I sympathise as I couldn’t manage a full time job and looking after a child ...it must be a huge struggle. We love having our grand daughter and I push through the exhaustion when she stays over night with us ( although don’t know how it will be after three months not having her)but, then I get to rest but that isn’t the case for a mum or dad, of course.
I don’t want to be too negative and really hope you find a gp who wants to help but, from my own experiences of various gp’s over the past 15/17 years , I’m best to try help myself. The drugs seem to have had negative impact on other aspects of my health (liver problem)
Thank you for your reply. I think getting better sleep will really help some of my symptoms too, so will explore this further.
I have Epsom salts and I find they are definitely really helpful when the toddler allows time for a bath! I have found that a local hydrotherapy pool runs fibro sessions so when they are able to reopen I am very much hoping to be able to organise childcare to attend those sessions, as well as going to a more local pool to swim.
I'll do some more research on the magnesium side of things, thank you!
That’s great if you can find help for Fibro with hydro therapy (I’ve not found anything like that where I live) . I’ve heard great things about it. Swimming helps but most of the public pools are so cold.
Hello everybody - I just wanted to thank you as a group for your responses. I have taken some really helpful points on and will reply to some of you individually with some specifics too! Thank you for making me feel less alone xx
take a look into cbd oil that works wonders for some people , also worth looking into LDN low dose Naltrexson lots advice on net and a vid on youtube by doctor chris steel from tv , also being a sufferer for 20 yrs , i can tell u keep moving even when it hurts if u dont it gets worse , i am to sensitive to meds , so i use a lot of natural topical pain relief , i have different ones for different types of pain , hot ones and cooling ones ,my daily one is a cannabis gel perfectly legal its cooling not sticky and reduces the pain , i also have a electric heat pad and ice packs , also if yr drinking or eating anything with aspartame in drop it it increases yr pain in most sufferers , i am also looking in to Myofasical release, also we do not absorb vitd3 well so most of us take a supplement , one time my pain was so bad i could barely put my feet to the floor , as soon as i told my gp he tested me for deficiency my level was on the floor iv been taking it daily ever since , i hope iv helped a bit ,
Complain. First to the Practice manager, then escalate it up the chain of command.
Your GP should have explained, at the very least, that medications lose their effectiveness over time, and the more you rely on them to get you through, the harder they become to get off, especially the opioids.
It's a difficult time to have been diagnosed, with far more attention being given to Covid19, although it has always been difficult to get GPs. especially older ones, to take us seriously.
I have had Fibro for many years now, and I have managed, by dint of sheer Bl**dy Mindedness to get of all medication, except Ibuprofen, which seems to suit me, although not recommended for those with Asthma. I also have a small amount of Co Dydramol, which I reserve strictly for Dire Emergencies (My last lot has gone out of date, and I don't know If I will be given any more). I am relatively confident that I can manage without.
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