Pain relentless

[Meditationlover]

Having a bad weekend so far, I can't shift my pain, so exhausted and in bed. Took tramadol, but to be honest it hasn't done much,

[AllthatGlitters]

hello sorry you are having a bad weekend, tramadol makes me feel 🤮although it helps with the pain. Have you got a Tens machine? Hot water bottle?

I love a V pillow when I am on a flare, to be as comfortable as possible. Hope it passes soon for you ❤️

[Meditationlover in reply to AllthatGlitters]

Thank you for your kind words. I might have to invest in a tens machine, I'm under weighted blanket at moment, I hope your doing okay. How much are the tens machine x

[AllthatGlitters in reply to Meditationlover]

I got mine from Lloyds chemist £22 but that was about 3 years ago x

[Meditationlover in reply to AllthatGlitters]

I'm definitely going to get one, thank you

[Smoggie1]

So sorry for you..I think heat is making mine worse..pain in knees and hip just won't subside even with co dydramol.. and sleeping in just a sheet...haven't had much sleep at all.. also something weird I found out I applied for blue badge as got over 10 points. Was told when they enquired with pip I have only got it till 1st sept..so on the phone for an hour and found out all the forms I refilled in..in march have not even been processed.

So woman told me to get pip till then..only 2 months and if my repeat application is not done by then they will just send me a cover for another year and I will then have to get onto local council and renew the badge..

They also told me to collect all my evidence together as I may be going to attend an actual interview..I said what evidence..apart from a doctor in last 3 yrs have not seen anyone unless for other symptoms like my lymphoedema..they are not interested.we have something called patches and you fill everything in online..if that is not full..then they might give you a call back or email..it's just a complete joke.. it makes you depressed.

So I don't know how I will get on at interview. Makes you just really fed up and they don't care what you have or the pain your in.

I see your only 51... I'm 61.. and I wouldn't wish this on anyone..

You need to get back onto your surgery or specialist if your lucky enough to have one.. as you may need your dosage changed or other help.xx good luck..

[Trappedmoth in reply to Smoggie1]

Regarding the PIP, AgeUK helped me. In fact, they did everything for me. I now have the PIP. Apparently people over 50 yrs old can ask them for help.

[angelikjan in reply to Trappedmoth]

That's good to know, I'm 62 and have had fybromyalgia (amongst other things) for years but was refused blue badge, so may contact them to help with the forms I just haven't got the energy to do them all over again.

[Maud-ie]

Tramadol, co-codamol, naproxen etc - IMO nothing works on bad days. Just stay in bed and keep warm. Sending love and hugs x

[Greyt in reply to Maud-ie]

Hi Maud-ie no meds work for me either 😢 it feels hopeless.

[Private18 in reply to Greyt]

try antihistamines- all the pain relief in the world didn’t work for me either. I now use fexofenadine, diphenhydramine, and cetrizine. They do take the edge off.

I also take quetiapine - which gives me a good nights sleep

[Trappedmoth in reply to Maud-ie]

Most chronic pain specialists seem to agree that opiods like Tramadol are of very little value for treating chronic pain. For pain I take Low Dose Naltrexone (LDN) and Sativex (medical cannabis). They don't completely eliminate the pain and other fibro symptoms but they certainly take the edge off the pain and make like considerably more bearable for me. Neither are easily available from the NHS. The LDN costs around £20 per month on a private prescription. Sativex is much more expensive, but is also obtainable on a private prescription.

[Bengan in reply to Trappedmoth]

I tried LDN but it gave me terrible headaches. I was really disappointed as I’d heard that many fibro sufferers get relief from it. I’m now considering medical cannabis. Could I please ask which clinic you went to to get a private prescription? Did you have a good experience with this clinic?

Many thanks

[Trappedmoth in reply to Bengan]

I'm sorry to hear about your headaches. I haven't had any significant side-effects from LDN. I was prescribed LDN via a Pharmacy in Glasgow, Dickson's (dicksonchemist.co.uk/new/). I have the great good fortune to have a prescription for Sativex (medical cannabis) from my NHS consultant. You could try having a discussion with your GP and/or pain specialist. However if you can't via the NHS, Dickson's also has a Cannabis clinic: dicksonchemist.co.uk/new/me.... My experience with Dickson's has been excellent. I believe that there is at least one cannabis clinic in London: duckduckgo.com/?t=ffab&q=ca....

[Bengan in reply to Trappedmoth]

Thank you so much. That’s really helpful. I don’t think the NHS doctors in my area are ready to prescribe medical cannabis for fibromyalgia. I was told that this was something that the NHS might start doing in about 10 years time.

I got my LDN from Roseway Labs but I’m wondering if I should try out Dickson’s in case they use a different formulation. And I’ll definitely look into the medical cannabis clinic they have.

Thanks again for your help. Really hope both the medications carry on giving you some relief x

[Smoggie1 in reply to Maud-ie]

Exactly that what the specialist at pain clinic said to me..pain med up to 3 times aweek as they would damage my other organs and go to be in-between when bad..glad my husband was with me to see how I was treated and what was said. otherwise I don't think he would have believed me if I had gone home and told him.

[Wonderwall3]

If it's any consolation, I had a terrible night also. The burning pain in my neck, shoulders, arms and feet has been excruciating. Oramorph made me sleep but this morning the pain, although slightly dulled, is still awful and my head is SOOO woolley, I feel like I've had 8 pints! To be honest, my GP I feel is just about out of options for pain relief. I've got an open appointment with a pain clinic but I rang them about a month ago and they still haven't got back to me about a medication review.

Oh, I am so sorry you are having such a rough weekend. Do you have one of those packs which you can either heat or put in the freezer to apply and see if that helps? I use the cold pack on my neck, as that's where the pain originates and goes downwards. There is a company call M.C.C (I think it stands for Motorbikers' Cosmetic Company) who do a whole range of products to help with pain and I have their Pain Warrior balm which is very soothing to put on tender points. There is also the biofreeze gel, which is a topical cooling gel. I know you say that tramadol doesn't do alot for your pain, but maybe a combination of more natural products might help in some small way? I didn't get on with my TENS machine unfortunately, but I know it gives others some respite so it's definitely worth investing in one. I got mine from Amazon a couple of months ago and it was £26.

I do hope you find something to help. Please keep us posted.

[Meditationlover in reply to Wonderwall3]

I also had another bad night, been up since 3.00am, but on a good note, after yesterday being laid up in bed, I'm feeling much better today, thank god. I'm so sorry you are not good at the moment , it's very difficult isn't it. I'll get a tens machine, see how I get on x

[RustyOBear]

so sorry to hear this. I don’t take any painkillers, they don’t really work and I don’t want the side effects.

What I have found helpful though is using my Headspace app. There are guided meditations for all sorts of situations including pain.

I lie on my bed and listen. I think it makes you relax and somehow the nervous system responds and ghe intensity of pain lessens. Sometimes releasing the tension in the muscles allows the pain to subside or even disappear.

Even if this is temporary it’s good to know that you can break the cycle rather than continuing to suffer.

I expect there are plenty of other apps or you tubes out there that do something similar.

I hope it eases for you soon.

[Meditationlover in reply to RustyOBear]

I lay on bed and listen to meditation music it does help me relax more, and whilst under weighted blanket x

[Smoggie1 in reply to Meditationlover]

I cannot have anything heavy on my legs or hips or it just cause more pain

[Meditationlover in reply to Smoggie1]

That's a shame, I hope you've got other ways to help ease your pain

[Private18]

no painkiller in the world got rid of my pain. For about 6 years I suffered excruciating head crushing pain, ear pain swollen eyes gum and tooth pain. Plus all the usual pain throughout the body, until one day they treated me for allergic rhinitis with fexofenadine- the headaches stopped! It’s taken me years to work out and manage my Symptoms - it all seems to be connected to food, scent, temperature, sound and chemicals and processed foods, not much then! Oh and alcohol. My body treats everything as a foreign invader. I have to try and avoid so many foods and drinks and perfumes, even scented candles can cause me pain. It’s like a sensory overload. Causes all the symptoms you have described. Magnesium baths and supplements help! Also a healthy diet of fresh fruit and veg. Avoid tea coffee and squash.

Maybe there is something in the above which may help you - I don’t know- but don’t give up trying to navigate this journey. I hope your pain eases in time x

[Meditationlover in reply to Private18]

Thank you so much for all your advice x

[angelikjan]

Hi, do you take your Tramadol on a regular basis? I also have Butec transdermal patches which really help me. Maybe it would be worth asking gp if you can try them, or something similar. Hope you improve soon. Take care.