opinions

[Rachm87]

what treatments have people found useful im new to this and it’s all a bit daunting . In so much pain I’ve tried gabapentine and tramadol so far

[trip77]

It's different for everybody as everyone is affected in different ways. I think the most common thing that people tend to do, is to stay active and not to let it beat ye down into spending all day in bed or behind 4 walls. Yer mood seems to affect how ye cope with and feel pain as well I find, so if ye can put up with a bit of pain n get yerself outdoors and mingling with friends or family, or even just a walk in the park will help lift yer mood up, hopefully it will help with the pain too.

I've been put on slow release tramadol and find that that helps a bit more than the other tramadol I was on, and enables me to take a bit more pain while doing daily activities.

I'm on Amitriptyline, gabapentin, slow release tramadol, naproxen and Paracetamol and this concoction just about relieves it.

I find that concentrating on a good book or a gaming session on my ps5 helps me to mentally forget the pain for a while, so maybe ye could try something ye enjoy doing to take yer mind of it.

Anyway, I hope ye find yer zen methods of dealing with it n we're always here fer advice n if ye need to vent! Take care.🙂

[Yassytina FMA UK Volunteer]

Hello and welcome, it is hard, trial and error with meds until you can find something that suits, maybe a few trips too see the doc but worth it when we can find something that dulls fibro pain, if you can try and do some things during the day and pace yourself in between with say mini breaks in between. I do find a soak in the bath at nite much more beneficial for relaxing the body before bedtime. Yes I agree with trip 77 find ways to switch off be it a good film, magazine, chat on the phone, small walk xx

[Dinkie]

For me, and unfortunately as fibro is different for all of us, it depends on many things. I cannot tolerate prescription meds having been through most of them, so I rely on non drug methods. Tens machine, biofreeze gel, heat pads, epsom salt baths, vitamin D (important to get levels checked as too much is bad for you but too little can lead to muscle pain etc), diet (nothing processed, all batch cooked from scratch on better days and frozen). Gentle strolls and stretching can help. Some swim, some do Tai Chi, some attend pain clinic or CBT. I use the chiropractor and hypnotherapy when I can afford it. It's a case of if it works for you it's worth doing.

The best advice I can give is to try and learn the art of pacing. On better days do not run around doing all those things you haven't been able to do for a few days. If you do then sure as eggs is eggs it will result in a flare of symptoms. If I have something I really want to go to, then I take a day off work before and possibly 2 days after as holiday leave to give me a chance to recover. Also remember because you did something yesterday doesn't mean you can do it today so don't expect too much of yourself. Look up the spoon theory if you don't already know about it and try and educate those around you (easier said than done). If you have to say No because it will overtax you then say No - those that matter won't mind and those that mind don't matter.

Good luck with your quest for what works for you.

[Rachm87]

Thank you for your reply , this is actually really helpful as I want to try other things before the stronger meds . I will definitely look into everything suggested x

[Dinkie in reply to Rachm87]

Not sure whereabouts you are based but I found a referral to the Fibro Clinic at Guys and St Thomas's hospital really useful. Only one appointment permitted but you would be seen by several people in different disciplines and together they put together a plan and send it to your GP. Might help, I had to wait ages and it took a letter, a phone consult and a meltdown on the phone to my GP for her to finally refer me. There are other clinics in other parts of the UK if you are UK based. It was certainly a relief to attend an appointment and be believed and to be treated as an individual. I cried with relief after the appointment, at last someone thought I wasn't barmy - not that my fibro friends here would agree with that last bit😂🤣😂

[Rachm87 in reply to Dinkie]

That’s useful to know , I am under a rheumatologist as I have also just had a positive blood test for rheumatoid arthritis she was the one who diagnosed me with fibromyalgia and said she thinks I have rheumatoid arthritis aswell . So already under there care she’s referring me to the pain clinic and also told me about this support group. I will mention it to her when I see her next as have to have scans to see what bone damage I have from the RA . So double whammy for me 🤦‍♀️

[Dinkie in reply to Rachm87]

Many of us have ailments too. I have arthritis and sometimes it’s hard to know what is causing what pain🤦‍♀️

[Sallybones]

None helped me and believe me I've tried everything. Fibro is a very often misdiagnosed - I keep telling my GP that. I'm thinking I will die without getting to the bottom of my physical health problems.

[JoseT]

Hi Rachel,

My advice

Ginger with turmeric tea, amazing for the pain. Gluten free diet, which is anti-inflammatory. Have fish and omega 3. Have magnesium and probiotic supplements. Use a magnesium spray after your shower. Have 2 weekly baths with epsom salt. Do regular exercise (highly recommended swimming and water activities), mindfulness, meditation and breathing exercises to promote your parasympathetic system. Listen to classic and relaxing music. Visit at least once a week a chiropractic for adjustments and massage. Have acupuncture and craniosacral theraphy from time to time. Inhale O2 oxygen for fibro fog. Take Vitamin D and multivitamin supplements every morning. Take also Palmitoylethanolamide, Q10 and ribose supplements, they are amazing. Make sure your B12 level is always high, otherwise have regular injections. Take regularly electrolytes. Buy an infrared sauna wrap or an electric heat blanket. Use essential oils and aromatherapy. Stay away from pharma and opioids, go instead for kratom to manage your worst pain. Which is also addictive but you can pace your dose every other day or two days. Read the book "Kratom is medicine: Nature relief for anxiety, pain, fatigue and more" to understand better how to adjust your daily and low kratom dosage. Believe always that you can cure yourself with a positive mind, work in neuroplasticity (use and learn from applications like curable, mayv or pathways). Dont read facebook and stay away from people who are just moaning all the time about this syndrome with very toxic posts. Chat daily with your closest friends. Remember the pain goes always away and is not dangerous. Try to rest and sleep as much as possible.

Believe me your best days are still ahead.

all the best

Jose

[desquinn Partner Volunteer FMAUK Trustee in reply to JoseT]

Kratom is illegal on the uk

[JoseT in reply to desquinn]

really? wow. That is so unfair towards chronic pain sufferers. Is there any proposed legislation to reverse this status? thanks

[desquinn Partner Volunteer FMAUK Trustee in reply to JoseT]

as far as I am aware it has even less evidence base than cannabis although I am aware there ire strong adocates for it in the states. Due to lack of evidence and its psychactive properties it is illegal and not sure that will change anytime soon. I think it was in a grey area prior to 2016 but (Psychoactive Substances) law changed to accommodate the designer drugs that were being made and abused like spice.

[Chloe789]

I've tried many many many pharmaceutical meds for my fibro. None of them actually helped the pain. It was suggested to me to take turmeric tablets (that also contain a little black pepper in, to help you absorb it correctly) And these tablets were the first thing that actually gave me times without pain!

Turns out I have inflammation going on in my body, which is why this works for me, according to my doctor.

I now take other anti inflammatory tablets, cod liver oil and Primrose oil tablets.

Plus other vitamins and supplements that I'm low in.

If the pharmaceutical drugs are not working for you, look into other ways of treating the pain, as they could work much better without the horrible side effects.

[557755]

Ok - here goes .... I take gabapentin, 30/500 co-codomol and napraxon.

Duloxotine 120mg in a single dose

Supplements : magnesium, D3, iron, Omega 3

Exercise: Gentle and restorative yoga, swimming for 10 mins, hot tub then another 10 mins, (although sometimes I walk in the pool rather than swim), Pilates, gentle walking

To sleep / relax: Melatonin, meditation apps for sleep, relaxation, pain (I use Headspace which I get free as a teacher) but there are loads, and yoga nidra

I generally manage to get through the days with this lot and most of those days are good. This heat is making this a pain day though and only lying in a cold bath is reducing it but not for long!

Good luck with your journey - as I'm sure you'll see from this group, everyone's is different xx

[Rachm87 in reply to 557755]

I found the heat is making it worse to how strange

[557755]

I knew I'd forget something! Also turmeric with black pepper and I'm under the chronic pain clinic and have lidocaine infusions.

[Rachm87 in reply to 557755]

What are lidocaine infusions ?