Writing thesis on Fibro and Touch, anyone down to be interviewed?

Oberon

Member
Joined
Mar 2, 2022
Messages
22
Reason
DX FIBRO
Diagnosis
02/2022
Country
US
Thank you Jay! You're the best!

Kim, I would have put my email in my reply to you for ease of finding it but it shows up as a link which needs to be reviewed by the mods and I didn't want to give them more work and delay in posting. Sorry that was a little confusing! Thankfully we have Jay here who is maybe the most helpful person I've ever met!
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,423
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Thank you Jay! You're the best!

Kim, I would have put my email in my reply to you for ease of finding it but it shows up as a link which needs to be reviewed by the mods and I didn't want to give them more work and delay in posting. Sorry that was a little confusing! Thankfully we have Jay here who is maybe the most helpful person I've ever met!
You are permitted to give your email address to someone in a private message. :)
 

Badger

Senior member
Joined
Apr 2, 2021
Messages
257
Reason
DX FIBRO
Diagnosis
01/2001
Country
UK
All the best in your study, perhaps it could be illuminating. This sensation is a strange and troubling one, I've had awful sensitivity and pain in my forearms for many years. Pregabalin helps but makes brain fog worse.
 

Oberon

Member
Joined
Mar 2, 2022
Messages
22
Reason
DX FIBRO
Diagnosis
02/2022
Country
US
I'm sorry to hear that Badger, it's interesting that your sensitivity is localized so specifically. Is it worsened by outside stimuli or a steady level of pain and sensitivity? I'm also on Pregabalin and woo boy the brain fog is a lot.
 

Badger

Senior member
Joined
Apr 2, 2021
Messages
257
Reason
DX FIBRO
Diagnosis
01/2001
Country
UK
Before medication there was severe burning pain from the top of my forearms to my fingers. It made getting dressed very uncomfortable and took a few attempts before a GP would prescribe Pregabalin. It fortunately calmed down the pain a lot, but there's still a deep ache and the burn can flare up quickly with activity such as using a keyboard or TV remote. For many years now I've been afraid to even shake someone's hand because of the tenderness. Occasionally there can also be bouts of sharp pain over skin of my fingers.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
2,152
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
You are permitted to give your email address to someone in a private message. :)
I'd tried to pm Oberon before and it didn't work, so thought they haven't got the rights yet. I tested it again now: It still "isn't allowed"...
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
2,152
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Pregabalin helps but makes brain fog worse.
I'm also on Pregabalin and woo boy the brain fog is a lot.
So the brain fog (plus other side effects?) is better than the pain for you?
For me it's not, I need my brain to self-care and have fun. 😜
I do have some alternative at the moment, I don't know if it's similar: My pain is up now since the acupuncture allows me to move more supply, but not influencing the pain. Goes up to 4-5 during the 2nd game of table tennis. I'm using it as a warning sign, but would tolerate it to the point of crying/shouting (my '7') if I knew I wasn't doing any harm - which I am, because this pain as opposed to other pain types is "making" me play worse, disabling my movements.
But this is all no reason for me to suppress the pain with something that has side effects. Pain with brain rather than no brain with no pain, I've liked to say. But of course we're all different. And also I've never been privileged to experience a pain killer working, plus usually severe side effects. I'm just guessing that their brain fog is similar to the zombification I experienced with amitriptyline for four months, and I'm never never never ever going back there, even if that were the only side effect I'd have.
I do think my positive outlook and pain management is an essential starting point. As well as doing everything else to get at least local pains down that I can, whatever the cost. And - again - these are also no longer possible with zombification.

Arm pains: Badger, did you try / have you tried / are you trying other treatments for your arm pains? Do you think it's more nerves or more muscles? In my case if I move my arms short & quick, like in table tennis or on good days push ups, they're OK, but anything longer or above my head, esp. window cleaning, blow drying and even kitchen work used to be a big problem. This seems common in FM . I've managed to decrease that a lot, but if not I use workarounds - mainly task-switching, but if necessary resting my arms on something to use them.
 

Badger

Senior member
Joined
Apr 2, 2021
Messages
257
Reason
DX FIBRO
Diagnosis
01/2001
Country
UK
Jay, my arm pain feels like burning neuralgia. I've tried pain killers, tens machine and cold therapy but nothing helped to calm it down. Where I live the options are limited wether on the health service or alternative. I've been tempted to try a lower dose of Pregabalin to see if the fog improves. It's difficult because as much as I hate such a mental blindspot the constant servere burning made me miserable. I use gentle stretches for wrist and fingers as well as task switching.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
2,152
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Jay, my arm pain feels like burning neuralgia. I've tried pain killers, tens machine and cold therapy but nothing helped to calm it down. Where I live the options are limited wether on the health service or alternative. I've been tempted to try a lower dose of Pregabalin to see if the fog improves. It's difficult because as much as I hate such a mental blindspot the constant severe burning made me miserable. I use gentle stretches for wrist and fingers as well as task switching.
Hmm... I'm not sure how I'd cope with burning... (My jab side effects have been a burnt tongue tip feeling for days, but I doubt that's comparable, and burning skin in alternating areas for a few hours to days. Both allow distraction, which I very much doubt yours does.)
Before going into it deeper: You haven't been able to get it checked neurologically, I assume? Causalgia / CPRS'd seem to be "a name". I wouldn't think "paraesthesia" fits, cos it's too much pain for that.

Does "options are limited" mean nerve & pain supps and anti-inflammatory spices are too expensive too - have you tried some? enough?

The burning making you miserable again brings up the question of pain management: Anything you could increase there? Angles might be
1) learning to suffer without (inner!) complaint like sunkacola's dogs,
2) going "into" the pain and trying to re-interpret some of it ("warmth"),
3) mindfulness, relaxation, body scans,
4) books or videos about all this, like Kabat-Zinn.
What works best is very personal, may vary, best to have all in our tooboxes.

Especially if options are limited I'd always try youtube.
Testing it myself, looking for "burning arms" doesn't help, but causalgia or CPRS treatments does - or would if that's a side diagnosis that you feel is fitting....
By that I find "Treating CRPS: What's in My Toolbag? - RSDSA" which points to ketamine and LDN, the latter being one which some people have success with for fibro, ever tried that? How easy would that be to get? He rattles thru a whole load of very familiar sounding meds which reminds me if you've tried gabapentin instead of pregabalin: Altho pregabalin was developed because of the tough side effects of gabapentin, some people do better on gabapentin. I'd give a med 2-3 months at most (now), if that's possible.
 

Badger

Senior member
Joined
Apr 2, 2021
Messages
257
Reason
DX FIBRO
Diagnosis
01/2001
Country
UK
I saw doctors about it many times and brought it up with physios plus the pain clinic who will no longer see me. It began after lifting too much instead of asking for help. My right arm from the shoulder went into spasm afterwards for a short while. From the day after constant burning began in both arms from elbow to fingers. It made getting dressed quite painful. Although I saw a neurologist about a neck injury, he did say I'm oversensitive to pain from illness and injuries.

In my area there are long waiting lists and few treatment options as I've been told by doctors. They will only really prescribe Amitriptyline and Gabapentin or Pregabalin for Fibromyalgia. I was refused several times by different GPs' before giving me a chance with Pregabalin.

I've tried painkillers such as Co-codamol and Tramadol but they haven't helped. Side effects of medication are usually a problem. There were antidepressants too, but they didn't agree with me. I forget which supplements I tried around the time but in the last few years I tried many different CBD products with no joy but did start taking magnesium in the new year.

I've been practicing mindfulness meditation for a couple of years and added gentle breathing exercises. It's been worthwhile and helped in some ways but I still get swept up in vicious cycles. YouTube has been handy, I've tried Yoga Nidra a handful of times after a recommendation on the forum and happened to find a body scan by Kabat-Zinn a few months ago while searching for advice. Philosophy has been something of interest and I've tried to search for something of benefit in it.

Thank you for your reply, I will be looking back at it while considering what to do. Although the last few years have been particularly stressful, I've made some changes but need to commit and continue towards a lifestyle change.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
2,152
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
doctors ... physios ... pain clinic who will no longer see me. ... lifting too much ... constant burning ... made getting dressed quite painful. ... neurologist about a neck injury, he did say I'm oversensitive to pain from illness and injuries. ... Amitriptyline and Gabapentin or Pregabalin for Fibromyalgia. refused several times ... before ... Pregabalin. ... forget which supplements ... CBD products with no joy ... start taking magnesium in the new year.
mindfulness meditation ... breathing exercises. helped .. still get swept up in vicious cycles. YouTube handy, ... Yoga Nidra a handful of times after a recommendation on the forum ... body scan by Kabat-Zinn ... Philosophy ... interest ... search for something of benefit in it.
Thank you for your reply, I will be looking back at it while considering what to do. ... lifestyle change.
I'll keep your burning in mind too.
I was gonna apologize if I'd already made these suggestions, but you forgetting that it was me who recommended Y.Nidra excuses me. 😏
Also same as writing things again and again makes things clearer to myself, it's hopefully also for others.
And we do change and turn over stones again and again.


Does it work better for the burning to push thru a bit to not get rusty or keep to the sweet spots to not aggravate?
Have you found a workaround for getting dressed (apart from not doing so :rolleyes:) ?
So swapping to gabapentin isn't a choice at the moment I spose, and even if: maybe not worth the effort... And LDN neither?
Supps for inflammation: ALA, vit. D (+K2), ginkgo, mumijo, NAC, Ω3, PQQ, CoQ10, pine bark, Quercetin, Resveratrol, Rhodiola, SAM-e, Selenium, serrapeptase and zinc and more.
Supps for pain: GABA, magnesium malate, mumijo, NAC, NADH, Ω3, CoQ10, SAM-e and serrapeptase and more.
Looking at these I'd expect you've tried Ω3 and CoQ10, but praps NAC would be worth a try?

Philosophy: More Western or Eastern, ancient or modern?
 

Badger

Senior member
Joined
Apr 2, 2021
Messages
257
Reason
DX FIBRO
Diagnosis
01/2001
Country
UK
Ah yes it was you who recommended Yoga Nidra thank you, sorry about that. Unfortunately I can't push through with the nerve pain. It will flair with tasks such as using a keyboard for example. Fortunately it calms down by the next morning. Pregabalin has reduced the pain a lot but it's temperamental and the skin is sensitive. Gabapentin was tried first but didn't work as well as Pregabalin in my case. Before that I would be pacing the kitchen at night. Soft loose fitting clothes help, it used to feel like sandpaper pulling clothes over my arms.

Thank you for the list of supplements, I wonder if some will help my pains. CoQ10 is one that was tried many years ago. I shall read up on them slowly and decide which to begin with.

It's a case of in through one ear and out the other with me frustratingly, but I do find philosophy fascinating such as Stoicism and Buddhism amongst others.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
2,152
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Gabapentin was tried first but didn't work as well
Ah, I see, good to know. But no chance of trying LDN? After all it's not expensive.
skin is sensitive .... used to feel like sandpaper pulling clothes over my arms
Ah, that's how it fits on this thread, I'd lost that. 🤯 So a lot of it is burning on the skin? Is anything below, in the muscles do you think?
Can you use silky stuff under the other clothes? I've heard some people say that helps them with the allodynia.
It's a case of in through one ear and out the other with me frustratingly, but I do find philosophy fascinating such as Stoicism and Buddhism amongst others.
Yeah, I get that. Probably best to "practice" it, by reading, then talking, then meditating with the specific pragmatic aim of implementing it.
 

Badger

Senior member
Joined
Apr 2, 2021
Messages
257
Reason
DX FIBRO
Diagnosis
01/2001
Country
UK
Ah, I see, good to know. But no chance of trying LDN? After all it's not expensive.

Ah, that's how it fits on this thread, I'd lost that. 🤯 So a lot of it is burning on the skin? Is anything below, in the muscles do you think?
Can you use silky stuff under the other clothes? I've heard some people say that helps them with the allodynia.

Yeah, I get that. Probably best to "practice" it, by reading, then talking, then meditating with the specific pragmatic aim of implementing it.
I've not heard of LDN, it would be wonderful if there was another option, I shall read about it. The burn feels deep into the muscle, but there is also some on the skin which is sensitive. With my dosage I've been able to wear soft cotton but happen to wear silk fingerless gloves most of the time. The back of my hands are sensitive, their cold a lot of the time but can get hot and swollen. Summer and winter is a painfully uncomfortable time.
 

Oberon

Member
Joined
Mar 2, 2022
Messages
22
Reason
DX FIBRO
Diagnosis
02/2022
Country
US
I've not heard of LDN, it would be wonderful if there was another option, I shall read about it. The burn feels deep into the muscle, but there is also some on the skin which is sensitive. With my dosage I've been able to wear soft cotton but happen to wear silk fingerless gloves most of the time. The back of my hands are sensitive, their cold a lot of the time but can get hot and swollen. Summer and winter is a painfully uncomfortable time.
I'm noticing a lot of temperature related discomfort in my hands as well, I should try silk fingerless gloves. Plus it sounds like a cool look! I've also been getting more sensitivity on my ears and cheeks/face, they get a cold burning feeling for hours after if I get too cold or am out in the wind. Have you experienced that at all?
 
Top