Fibromyalgia Chronic Pain

[Manukalover]

Hello my names Awhina. I'm 65 years old. Had medical concerns all my life.. But now, I can't handle it as the pain is above and beyond. I struggle to work and look after my family. Not knowing if I will wake with chronic pain is horrific for me at this time. Doctors and specialist just increase doses of medication.

[Scotsman53]

The TMS approach is highly recommended for chronic pain conditions such as fibromyalgia, it's done wonders for my CRPS. There are many resources online, one good one is tmswiki.org/forum/

[Konagirl60]

You haven’t described your pain in detail. Where is it? What movements make it worsen? What does the pain feel like? Is it burning, throbbing, cutting? Is your pain 24/7? Can you sleep ?

[Manukalover in reply to Konagirl60]

All over my body. Cutting is the word. 25/7. Im just weaning off Pregabalin 300mg. Making me ill. Going onto Amitriptyline 75mg as I've had a lower dose for years.I am admin for my own group: Fibromyalgia New Zealand since 2013.

[Evonne02]

Hello Manukalover, Like you I have some other acute medical ailments as well as fibromyalgia, which is acute chronic pain. I have had 5 different gp practices in the last 2 years, and don't know anyone who gets help with it. Fibromyalgia is a form of arthritis and I have the other 2 main ones too. It took me at least 5 years to get diagnosed by a hospital Rheumatoligist. That was only because a gp looked at my notes & said he was fed up with me not accepting that the new pains were arthritis, so referred me to hospital. He did apologise when Fibromyalgia was duagnosed, then referred me to my local Pain Clinic who just wanted me to take an antidepressant/sleeping tablet. I now take Amitriptyline 2 hours before bed 🙄

There's Fibromyalgia groups on Facebook ., Tiktok and Instagram, and you can also join Verses arthritis which is free, as well as Fibromyalgia UK, who charge a yearly fee.

From what you've posted it sounds like you should be on ESA (Employment Support Allowance - only get the one based on your tax). You should also be getting Pip (Personal Independence Allowance.... And, not working as if you keep working, it will be exacerbating your symptoms and causing you harm, or further harm.

You can also call your local Adults Social Services and ask for an assessment of all needs.

In the meantime whilst you decide, please ask to speak to the o/t, physio or counselling group/service of/attached to your employer. If not, seek out what your choices are via a Trades Union.

I sincerely wish you the best and hope you get some more help asap. All the best 😊

[Manukalover]

Thank you for your welcomed advice. I have applied for PIP thanks. I'm waiting for an assessment call. Also applying for Blue Card. I work for Mental Health. I have been to Physio & and am still going. I have been told the pain is coming from fibromyalgia, arthritis in my lower lumbar and arthritis in my neck. Three thing's. I have worked in Care in all areas for 34 years. Alot of lifting rolling people etc....trade union???

[Crystallmatters]

I had pain to the point I took my life, I woke in intensive care, after a very long journey, I have learned how to except my pain , how to have compassion for myself, at the start , I thought all the specialists were mad , no no they are so experienced, with lots of help I have learned , it’s not lots of medication to fight pain , it is the ability for me to except. We are all different, but when it comes to pain , body pain , hurt, feeling you really cannot take anymore , more tablets and morphine is not the solution. So what is for me and many pain sufferers. For me eventually and I wish it did not take me so long or to crash and reach the end of life.

To learn to except , learn my brain’s part in all of this, my close family wanted me to stay but I could take no more. I now realise that I let the pain consume me, as the wheel of emotions turned the screw got tighter and tighter, I could not really think straight anymore . I still struggle . I have what is called in the professional pain world of understanding a personal pain tool kit , with this it helps a lot , I can bring the pain level down , so first it is manageable, then so I can get back into the land of enjoying myself again , I would say the most powerful tool is love , I love my wife and girls so much , my family . So how when in pain , I embrace with understanding , compassion in the world of meaning my pain , for me music with my earphones is powerfully , a lot of experimenting with sound and volume, the type of music weather soothing, load and powerful, or Indian flute , drum, music for chronic pain and sleep , distraction, I will play music my mind will flow, I guess a form of meditation, you can have both music and read , you can have light dark ambient colour light, you can have sense, to touch to feel, to embrace, distract , don’t grab at the medication , have it ready pause try music and distraction first then a little, then drift rest , don’t beat yourself with practice , slowly it gets better. Have confidence to exercise, a walk in the evening, even if it hurts why , well you are going to build your first block of fresh air , feel the breeze, the moon , look closely. The secret I think is practice, time , music , movement.

The ability to stop and think what is happening to you , engage is a first important building block to a new me a person who has learned at last how to except with compassion and more confidence , control , respect for pain , respect for me , So much information in this care loving site of the Pain Community, Remember to look and read the information leaflets, they are so helpful and giving us , me snippets of information to add to our pain tool kit.

I never would have thought I could enjoy life again but I do , not with the loads of medication but with less and more care for me and close ones . To expect any time any place when the pain is creeping up , I stop recognise the situation. I now find my FND is a little better, as I don’t let my pain emotions run away with me , I think playing around with music has been a bigger step than I realise.

I still don’t know why some days my body decides to hurt so much to the point of exhaustion, I know , now that I can except , I recover more easily and can embrace.

I am so sorry you suffer , please look at optimising compassion and experiences, experiment with sound , colour , taste , feel, vision, , know everyone loves you and you are not alone . Loads love xx

[Crystallmatters]

Thank you