Pain is a monster

[Dylan62x]

I am sick of waking up in a morning and all I feel is pain I go to bed at night and still it's pain, I feel I'm in a none stop spiral my FIBROMYALGIA seems to be getting worse and it's such a struggle to do basic household work I have to keep stopping until my pain starts to subside and then start again. I am on so much pain medication I just wish that I could have one sort of medication instead of a cocktail of meds, I've tried to talk to my doctor about it but I seem to be brushed off all the time which really gets me down

[LoneEra]

Hi Dylan. Sorry you’re having a rubbish time and not getting the help you need from your doctor.

I think one of the hardest things with fibro is waking up every single day in pain. It’s so hard to remain positive...and to even want to get out of bed.

I just posted on another thread about self help measures. Have you tried any of these?

- Energy pacing

- Epsom salts baths

- Gentle stretches and/or exercise

- Clean eating and drinking plenty of water

- TENS machine

- Acupressure mat

- Mindfulness and/or absorbing hobbies

Please feel free to ask questions and I’ll try to help xx

[redmaple-5]

Dealing with so many different painful areas is very draining and difficult. Have you been referred to a pain clinic? Ask your GP to refer you.

[Hazel_Angelstar Administrator FMA UK Staff]

Sorry you are struggling so much.... Its difficult when you know that every day is going to be another painful day.

It does sound like you could do with a medication review, especially if medication you are on is not helping. Although it is useful to also remember that medication may only reduce the pain not take it away completely

If your gp is unwilling to consider other options, a referral to pain clinic may be way forward. As well as medication, pain clinics sometimes offer services that you cannot get from your gp including pain management programmes. These are educational programmes designed to help you learn how to live with a chronic pain condition and usually include topics such as pacing, activity, meditation, mindfulness, goal setting etc

[Just-keep-swimming]

Hi Dylan62x. I'm new here and had no intention of speaking to anyone to be honest. I was just looking for some answers because I was desperate for help. Reading your post was like hearing my own thoughts being echoed back to me. I don know if that made me feel comforted or like giving up. I wish i had something positive to say to you but at the moment, I haven't been able to get out of bed for three days so am not in the right frame of mind. I just wanted to say thank you for making me at least feel that I'm not alone in my pain. I hope you find your answers.

[Dylan62x in reply to Just-keep-swimming]

I know exactly where you are coming from most mornings it's a 20 minute plus struggle to get out of bed it wares you out and grinds you down. I think that it is a relatively new disease and not too much research has gone into it yet I may be wrong though. My wife was a really big rock for me and helped me not just physically but mentally too but she sadly passed away last december my 2 daughters do as much as they can but sometimes I have to fib to them and say I'm ok don't worry as they are both mums now and go to work. We'll I hope you get as well as can be expected soon take care

[saluhouse]

Hello Dylan. Fibromyalgia is a hard slog. We all are with you on that. Saying that - everybody is different. So there is no one-size-fits-all treatment plan.

We are all on a mix- and-match quest to find out what helps. But there is a lot of help on this forum.

My advice - stay as calm as possible - and read all the posts. Something as simple as stretching can really make a difference. And lots of people get relief from an Epsom Salt bath (tbh gives me cystitis every time I’ve tried it!).

But mainly - try to stay positive. How about trying to find a more sympathetic GP? There must be some out there.

Although just lately all new members of this forum seem to say the same - GPs just tell you to do your own research. That seems very harsh treatment for people just given a life changing diagnosis don’t you think?

Stay strong xxx

[Edz72]

Hi Dylan I’m new here and was hoping to find some consolidation on here. I can so relate to you. Doctors brushing it offf. Saying your on the highest of meds. Ignoring cries for help. I’ve got to the point that it’s not a life... just an existence. And a pretty crappy one at that. Warm baths was really the only thing that eased the pain. But my ot took it out and put me a wet room in with an upstairs toilet which was a plus side. I’d go and have baths at my partner’s flat but we split nearly 2 years ago. I do agree with the lady who mentioned stretching. Before lockdown me and my daughter started yoga. It hurt at first but after a few times it eased and really enjoyed it. Tried online but don’t have the room. (Tiny. Rooms) I’ve recently started an online course for relaxation and meditation. Really enjoy it and something to look forward too. Waking up in pain spending the whole day in pain and then going to bed in pain. Each day is a different day filled with different pain, I’ll say to my daughter I know you sick of me moaning but ......!hurts. I’m so sorry you feel like you. Doctors don’t really help. And the problem with fibromyalgia is the people who say.... well you look fine when inside your screaming out with pain. From the course I’ve started she downloaded a relaxation video, I watch that most nights and it does help. Sorry for the spelling mistakes lol probably loads x Sending you big hugs 🤗. Xx

[LoneEra in reply to Edz72]

I wasn’t sure about posting this, but I wrote an article this week about living and working with fibro. The parts about people saying you look fine might resonate: spark.adobe.com/page/ZtNm5K...

I wrote it for a corporate audience so it’s aimed at getting employers and colleagues to understand - but I also had fibro warriors and their friends and family in mind.

It’s personal to me - so other people will have different experiences. But I hope some of it helps you xx

[Edz72 in reply to LoneEra]

That’s brilliant love. Says it all 😊❤️ Xx

[saluhouse in reply to LoneEra]

Hello LoneEra. That is a brilliant article. You covered all the relevant points in a very succinct understandable way. Anybody reading it will learn about the difficulties of living with fibromyalgia - and you did it without a hint of moaning or self pity. Well done.

Just a suggestion - can you get it into the national press? That would really help the cause!

Xxx

[LoneEra in reply to saluhouse]

Thank you. Oh, I’d love the national press to pay attention 🙂 I am going to see what I can do to make our voices heard, I promise you that.

I’m writing an article at the moment on disability in the workplace - with Scope. And I’m hoping to reach some HR magazines with that one as well.

I also think GPs could do with reading how fibro really affects people, given the discussions we’ve had on here. Maybe I’ll send it across to my surgery!!

Originally, I posted this on LinkedIn and I’ve had some great messages and a few emails from people who have family members struggling with fibro. So I’m glad it’s helped in some small way xxx

[saluhouse in reply to LoneEra]

Hello LoneEra. Well in the wise words of Tesco - every little helps! If we all keep chipping away it has to make a dent in the wall of fibro disbelief.

I don’t know if it’s just my perception - but I do think GPs are getting more and more dismissive of fibro diagnosis. I know they are busy and the pandemic has caused extra work. But, even so, in my area they are reluctant to see patients face to face. And - even when they do - they operate a revolving door policy. So you are in - then out - without being helped or listened to.

So many sufferers are sent away to do their own research. How can that be right when the condition is so debilitating?

It seems to me that fibro numbers are growing. And once the survivors of covid are inevitably added to the mix - they will be astronomic. There has to be more help. And FMUK will be at the cutting edge.

Just my opinion.

Xxx

[LoneEra in reply to saluhouse]

It does seem that many GPs just don’t know how to deal with it and therefore make very little effort. But it would be great if they had a fact sheet for newly diagnosed people that they could print off while you were in the surgery...hmmm you’ve got me thinking now!! Xxx

[Purplebluebell in reply to LoneEra]

Excellent article!

[LoneEra in reply to Purplebluebell]

Thank you!

[Dylan62x in reply to Edz72]

I know where you are coming from I really do at times it just feels like a crappie existence with no light at the end of the tunnel. I've been on courses at the pain management centre @ one of my local hospitals I bought my own 10's machine which is pretty good while it's on but within a few minutes I'm back to square one of my routine, taking 70mg of zomorph, 2 co-cordamol and 10ml of oramorph twice a day and topping up in-between with paracetamol. I wouldn't wish fibromyalgia on anybody. Any how on that note stay safe and as well as can be.

Best wishes: Drew 👍

[dorking15]

I often felt I actually didn’t want to wake up . I attended an online course Coping with living with a long term health condition .... such as Fibromyalgia. It did help me to some extent. Go to NHS depression/ Anxiety and there will be self referral NHS funded set ups. Take a look. They do vary but mine was good. I fell yesterday whilst on a mini break back home up North and spent all day in A and E.

In so much incredible pain and really struggling as can’t move arm but I am believing I can deal with this and I will not let it overwhelm me.

[saluhouse in reply to dorking15]

Hello dorking. So sorry you have fallen and hurt yourself on top of all the Fibro pain. I do hope you recover soon.

You are right - a positive attitude is invaluable. It’s not how many times you get knocked down with it all - it’s how many times you get up again that counts! Well done you.

Sending best wishes. Xxx

[Dylan62x in reply to dorking15]

Never think that you don't want to wake up there's always something to wake up for your family even your pets if you have any I'd be lost without my big fella he gives me all I need to get up the next day I love him to bits plus he would be lost without his poppa

This is Dylan my big handsome fella

[dorking15 in reply to Dylan62x]

Thank you for that. You are reminding me of Gervais in Afterlife when the dog needing him kept him going. I was told it was passive suicidal thoughts.... not bothered about waking up. Getting a grandchild has probably been my best pick me up but now terrified as I have had so much contact with her and at moment can’t move my arm with so much soft tissue damage.

[Dylan62x in reply to dorking15]

Grand kids mmmmmm I've got 6 of em it's true best thing than sliced bread and even expensive at times but I wouldn't be without them hope your arm gets better soon take care

[dorking15 in reply to Dylan62x]

Indeed. We are overwhelmed with joy. 6 must be amazing. Thank you.

[Makie-Uppie in reply to Dylan62x]

I always wondered what the word handsome was for, finding it did not really fully apply to any humanoid males I knew, now I know who it really applies to.

[Midori in reply to Dylan62x]

He's Gorgeous! I love GSDs.

[Dylan62x in reply to Midori]

I would be lost without him I lost my wife last december so we sit and chat at night and share some treats he loves chocolate hobnobs

[LoneEra in reply to Dylan62x]

So sorry to hear about your wife. Dylan sounds and looks magnificent, though. My dog is a character too - favourite treat is a croissant!

[Dylan62x in reply to LoneEra]

He will eat anything except new potatoes 😁

[Pte82]

Dylan, look through these links to see how vitamin B1 (thiamine) can possibly offer a reduction in fibromyalgia pain. Low thiamine (vitamin B1) may be a result of a "functional" thiamine deficiency as explained in the second link and an example involving fibromyalgia and thiamine is found near the end of that article. This is a group of different forms of thiamine to check out their pros and possible cons: thiamine hydrochloride, benfotiamine, TTFD and sulbutiamine. Certain food products such as raw fish and shellfish contain thiaminases - enzymes that destroy thiamine. For more information about thiaminases search on "Thiaminases and other Antithiamin Factors." Large quantities of tea, coffee interfere with it's absorption too. Magnesium is needed for thiamine activation. Also research the vagus nerve and thiamine's role in it's function. Consult with your health care provider before using any supplement.

ncbi.nlm.nih.gov/pmc/articl...

eonutrition.co.uk/post/mega...

[athenadark]

Fibro is a weird condition, and a lot of medical practitioners don't believe in it and brush you off, I went through a lot of doctors before I found one that worked with me and understood that no I was not just hysterical, the pain is overwhelming but you learn to live with it an then your pain tolerance is broken and you're yeah it hurts when someone else would rate it unbearableunfortunately all you can do is find out what works for you, whatever that might be, you have to be your own advocate, you have to do the reading and try the supplements and whatever because your doctor either won't or can't. My doctor spent twenty minutes telling me about his elderly dog on devil's claw which turned out to be a lifesaver for me but couldn't recommend it to me directly. If a drug doesn't work after a few months [to get it into your system] go back to your GP and ask for something else. There ARE options. Ask about antidepressants that work with fibro [I've been on a few] until you get the one that works best for YOU. Find exercise that works for YOU, I get on well with aquarobics but it might not be for you. Yoga can be super helpful but that doesn't mean it's a magic cure or it's for everyone.

I'd also look into your sleeping position, if you wake VERY sore you might be able to mitigate that with creative application pillows, like a knee pillow to hold your hips in position, a bolster pillow for your lower back, that sort of thing. [Before you splurge use a rolled up towel tied shut for a couple of nights and see if it helps]

it's normal to be overwhelmed. It's normal to be frustrated and tired and angry and not able to express any of it. You are not alone in feeling that. Your doctor will have resources you can access independently for mental health support, if you need someone to talk to they are there.

you are stronger than this.

[Dylan62x in reply to athenadark]

I was finally diagnosed with fibromyalgia by a rheumatologist at my local hospital and still my doctor told me it was all in my mind and would have nothing to do with it needless to say I soon jumped ship and never saw him again

[Midori in reply to Dylan62x]

That often is the only way to do it. Especially if a Doctor is older, he or she will be more resistant to keeping up to date, so, in my experience, seeing the younger doctors in the practice is the way forward.

I had a difficult time getting diagnosed, even getting a referral was a chore, In all, it took about 20 years to get a diagnosis, but when I started it was widely disbelieved, and even ME had only recently been admitted to not being 'Yuppie Flu' after all.

I can't say that things have improved a great deal, but it creeps into Doctor's brains slowly but surely.

We have to become our own 'experts' in our condition, and have the information to hand when we go see them, in order to counteract their disbelief.

[Makie-Uppie]

yup.

[Fatball]

Hello, I couldn't agree more, I get to a point that life isn't worth living, so I force myself to think of good things. For me it's my grandchildren. I have missed them so much during the pandemic, it was my granddaughters 5th birthday party on Sunday, first time I have seen them inside (yes it's one day early) yet I came home and slept today I am still totally jiggered and will probably be like that for a while. Sorry I have no magical answers, like most posts. Life with fybro is very hard. The fact that it's not obvious makes it double trouble. I am lucky I have a GP who understands me and keeps an eye on me, we all on this site need to have a moan and a cry, it releases the pressure we live with. Take care.

[Dylan62x in reply to Fatball]

Yes life with fibro is hard and at times it is a nightmare but just think of what your grandchildren would be missing if you wasn't here for them you did the right thing and I bet it was great day you both had at your grandaughters birthday ( there's always something to get up for the next day ) keep on going and who knows they may find a cure for this damn awful disease 👍