Elephant in Pain

[Keela Too]

....
It could also be a spinal thing (some new research has found lower back pain is associated with a spinal disc infection with anaerobic bacteria, refs: † † ).

Wow! That really is something interesting. I'm going to share that with a couple of friends. Good find.

 

[Skippa]

I went through a stage for a month or two where I was getting intermittent stabbing pain in my lower back muscles, pain so sharp that it could make me instantly drop to the floor. I had no idea that muscles could be a source of such intense pain.

This pain was linked to some slight muscle cramps in the muscles.

My doctor suggested that standard anti-inflammatories like ibuprofen are worth trying. And sure enough, this made a major difference within an hour or so of taking it.

TENS machine can also be used for muscle pain.


Do you know if your back pain is coming from the muscles?

It could also be a spinal thing (some new research has found lower back pain is associated with a spinal disc infection with anaerobic bacteria, refs: † † ).

Hmmm... Verily! Tis interesting.

My PEM always involves my back somehow, localised pain and also the feeling that my back just can't support my weight.

Furthermore, I always get maximum benefit from opiates if I drop both paracetamol AND ibuprofen ones... It's just a shame the profens keeps messing up my stomach lining. Oh wells.

 

[hellytheelephant]

Thank you @Hip- it's so interesting hearing about everyone's different experiences, and reactions to medications. Ibuprofen was the first thing I tried- didn't work at all.
It feels like the pain is in the skin, muscles and nerves- like a big cloud of pain.

 

[Crux]

In this study, the bacterium, P. acnes was found to be associated with lower back pain. ( P. acnes causes acne.) I've read about all sorts of bacteria translocating throughout the body.)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4320560/

"Results
Eleven studies were identified. The median (range) age and percentage of female participants was 44.7 (41–46.4) years and 41.5% (27–59%), respectively, and in 7 of the 11 studies participants were diagnosed with disc herniation. Nine studies examined the presence of bacteria in spinal disc material and all identified bacteria, with the pooled estimate of the proportion with positive samples being 34%.Propionibacterium acnes was the most prevalent bacteria, being present in 7 of the 9 studies, with median (minimum, maximum) 45.0% (0–86.0) of samples positive. The best evidence synthesis found moderate evidence for a relationship between the presence of bacteria and both low back pain with disc herniation and Modic Type 1 change with disc herniation. There was modest evidence for a cause-effect relationship."

The evidence was modest, but still.

 

[Little Bluestem]

I am fearful of opoids after the Tramadol debacle, but my quality of life at the moment is so poor I feel I will have no choice but to take them.

Are you taking the opoids and still in great pain?

 

[hellytheelephant]

@Little Bluestem , no, I have not been on any since last June. As soon as it was accepted that my situation was chronic the pain clinic would not recommend that I took them and my GP wanted me to get off the tramadol @Crux - interesting stuff for sure. I think that knowledge of the spine is still in it's infancy. Both my specialists said words to the affect that 'backs are tricky, and there is a lot we don't yet know. Combine that with the limited knowledge of how and why pain is there...and you get my current predicament.

 

[Little Bluestem]

Even if they don't recommend them, will someone prescribe them? I agree with you that your quality of life may make them necessary.

I have minor back pain and have found an over the counter med very helpful. It is Curamin by Terry Naturally. It contains curcumin, boswellia, DL-phenylalanine, and nattokinase. It would not be enough for you alone, but if you took it with an opioid you might need less of the opioid. You would have to ask your pharmacist if they are compatible.

You could also add some topical treatments such as pain meds and the TENS treatment. Maybe if you combined enough things it would work.

 

[hellytheelephant]

Apologies for not personally thanking you all but-I can't thank you all enough for helping me a couple of weeks back. I felt as if I was losing my mind , and listening to your different experiences made me feel a glimmer of hope that I could cope. I don't know if I have a particularly low tolerance to pain, but I feel suicidal after a few days of bad pain ,( although not with that intention at all.) It is a very dark place as those of you reading this in pain will know

UPDATE: after worsening pain for weeks the last few days have been better( thank God!) I know however that the big pain will be back. I now have liquid morphine to try for ONLY when the pain flares up to 7 or 8 out of 10. @Skippa thank you for your thoughts- yes, the important thing is to be very disciplined and not to use every day. @Hip I do use a TENS but can only do so when the pain is not bad (!) @Little Bluestem - I will try to find out more about curcumin. Not sure if I could take it as I am intolerant of chillies...

So- I will try the opoid and then am being re-assesed in May when I am lucky enough to go to Burrswood.and I am hoping they have expert pain relief! As @Crux said things seem to work and then they don't.....

I will come back to this post and re- read your thoughts over time and let you know if they actually do find the source of the pain!.

 

[Hip]

@Hip I do use a TENS but can only do so when the pain is not bad (!)

One other thing worth trying is ultrasound therapy on the muscles. I found this highly effective for muscle pains caused by cramps. The virus I caught that triggered my ME/CFS seemed to increase the incidence of muscle cramps in the calfs and lower back areas not only in me, but also in several other people who caught the same virus.

Ultrasound rapidly disperses the muscle cramp and the pain within 5 minutes or so. I found this worked on me, and also worked on another family member with these virus-induced muscle cramps.

Ultrasound therapy used to be very expensive, and only available from clinics. But now you can buy a Chinese ultrasound therapy device on eBay for as little as £25, and they work very well. They all operate in the 1 to 3 Mhz region.

 

[Crux]

I feel suicidal after a few days of bad pain ,( although not with that intention at all.) It is a very dark place as those of you reading this in pain will know

When I feel this way from pain, it means, Take yer Pain Meds Now!

 

[hellytheelephant]

Hi folks
I just re-read this thread from over a year ago, and wanted to update.

This thread has given me more confidence in being more pro-active about pain management. I got Tramadol back....but I now use it very differently, as I am well aware of the dangers of taking it all the time....and the pain has got worse, and I am likely to have it long term. I do take it if I have to go out, push at my limits or if pain is intolerably bad...but I also take a combination of paracetamols, ibuprofen throughout the day, which seems to help ( it gets worse without).

During 3 months of flare up in Winter I had such bad pain I felt like I was losing my mind- at which point my Gp suggested to monitor and take meds every 2 hours- which I do still now. I set 2 hourly alarms throughout the day so I check-in with the pain level and act accordingly. If I am in pain flare up ( 6-8 out of 10 every day ) I will take meds around the clock, but cut out the Tramadol after a few days, so that my body doesn't get used to it and I have to take a higher dose.

Another thing that has helped me is using my creative work to express my pain- I think I have also blogged about this. As some of you may know, my husband also has chronic pain syndrome and has had a continous headache for the last decade. He finds great therapy in playing the piano.


Thank you to all on PR who are helping me so much with this.....I wish you all a painless day...and no doubt I will be back wanting a virtual hug during pain-hell so thanks in advance.

 

[PatJ]

@hellytheelephant Have you seen this thread about using ultra low dose Naltrexone to enhance the effect of opiods?

 

[hellytheelephant]

@hellytheelephant Have you seen this thread about using ultra low dose Naltrexone to enhance the effect of opiods?

I haven't seen it- thank you for pointing it out. Will read it all when I have a few more spoons. Helly

 

[Littlechili]

Hello Helly, this sounds like a huge amount of pain, not so diffrent from myself. With this much pain it is possible there is a nerve problem. I wouldn't speculate on the type but an inflamed muscle can push against a nerve. Alongside my ME/ I have a diagnosed chronic nerve pain disorder, it's bothered me For over twenty years from onset. Gradually progressing.
I take 400mg of Pregabalin a day, Cocodamol I have used for many years, the combination work well for me.
But for when I have flare ups of Chronic pain I have oral morph on prescription.
Chronic pain is really debilitating and I feel for you stay strong as getting through flare ups has pushed me close to the edge..
it also took me years of being told there was nothing wrong to get the help I have now...
Lc.

 

[hellytheelephant]

Thank you @Littlechili - it is one of the best things about this forum that there are others who have travelled the same road and bought the t-shirt when it comes to suffering chronic pain! I have been told I have chronic neuropathic pain syndrome ( there is no meccanical cause for the pain, and no injury etc).
I have felt the nerve pain has been worse this year and during Winter particularly. I also have muscle pain so it is more widespread than just certain areas. Sometimes it is like a circuit board gone wrong and pain sparks in random areas...

It is so interesting how different meds interact with patients- all the stuff that helps you, makes me really ill. Can't use Co-codamol, oral morph or Pregabalin!

Hope today is one of the good ones for you.
Helly

 

[PatJ]

nerve pain has been worse this year and during Winter particularly. I also have muscle pain

Have you considered magnesium deficiency? This recent post on a magnesium thread here on PR mentions a doctor who had severe peripheral neuropathy (nerve pain). He was able to gradually resolve it with magnesium.

 

[perchance dreamer]

@hellytheelephant, sorry about the pain you are in. I can totally relate. I have fibro and various spinal conditions that cause pain. Here are the things that help me the most.

I have an acupressure mat that I lie on, and it really revs up the circulation to my back and neck, which helps. Mine is called the Heavenly Mat, but there are several different brands, and I think they are all similar. It's most effective against bare skin. I got mine a long time ago:

http://heavenlymat.com/

I see you are in the U.K. Here are some of the mats from U.K. Amazon:

https://www.amazon.co.uk/s/ref=nb_s...refix=acupressure+,aps,284&crid=26K4UI1GA38NO

Something else that really helps me is cold packs. Have you tried them? A chiropractor said to use cold packs for 20 minutes on, 1 hour off.

The most effective therapy like this is using cold packs alternated with heat packs, or if you don't have those, a long hot shower. I think it's called intermittent therapy.

I also find a type of acupuncture called auricular therapy helpful for pain perception. The needles are applied to the ear, which has a much stronger effect on me. It's also used for PTSD, detox symptoms, and depression and makes me feel just wonderful. It's the most relaxing feeling I've ever experienced. It doesn't last that long for me, but I still do it from time to time.

As for supplements, the Meriva form of turmeric works the best for me. My nutritionist said the Meriva form of turmeric works the best for pain, and the Longvida form of turmeric works the best for memory. That's been my experience.

I hope you feel better!

 

[Littlechili]

All great information, I'm not sure how people feel about tens machine on the forum. I use mine for pain flare.ups, it dose not remove the pain but distracts me for a short while.
Lc

 

[Manganus]

All great information, I'm not sure how people feel about tens machine on the forum. I use mine for pain flare.ups, it dose not remove the pain but distracts me for a short while.
Lc

"tens" ???

As in transcutaneous electrical nerve stimulation?

Good - particularly when it works!

Although the matter is anything but fun, it was ...nice to get your update, @hellytheelephant !

In my particular case, two things seem to have helped:

1. day-light, and in particular sun - This is a complex matter: I don't understand how or why, but I actually do believe that I have been helped by being outdoors (on the balcony during months when I can't walk). My conditions have usually been worse during winter and early spring. Most years, May is my month of improvements. (Not this year, however, and not that one year when my situation was comparable to yours, Helly.)
2. Ketoprofen has probably had a good effect. It might be very individual. But it seems as both my siblings and my mother also have good help. Our symptoms are not identical, but rather similar. (Although mine seem to be worse.)

I can relate to what you write, Helly. Too well!
Luckily, it's five years ago. The last years have been slightly better, each year. One gets less suicidal.
This year I can walk stairs without being visibly in pain, and I've almost stopped with painkillers.
It's a happy improvement!

I don't know if it makes any sense to you. I used to believe that I had a very high tolerance for pain. Working in a psychiatric ward, I was less disturbed by nipping, biting and scratching patients than any of my work mates. ...or by nipping animals, for that matter. ...or by heat.

Then I started to take painkillers before going to the gym. Then I stopped going to the gym altogether.

My years of severe pain started with a strange headache, that arrived with a sinusitis. But then followed stroke after stroke. Most of them without any proper diagnosis. In retrospect, I suspect one of these set-backs was an inflammation in the thoracic diaphragm. It was not fun.

After I had stopped working, I was still active in some associations, including the housing cooperative where I lived. One day, after having spoken a lot at a meeting, I got sudden pains from one of the jaw joints. And from there the aches extended. The following months I could hardly swallow my own saliva. And physicians... they didn't know what to believe. Finally, a rheumatologist proposed Ketoprofen.

One can't know for sure, but I've become pretty confident that my pain chiefly has to do with the way the sensory nervous system works. (Not only. Also inflammation plays a part.) One may believe that signals travel only in one direction, from the body to the brain. But I think it's fairly well established by now, that signals go in both directions. The purpose must be to alert us when new things occur, to concentrate on the important new sensation.

Anyway, I suspect that my nervous system, for some reason, was unable to send the appropriate feedback, that should have down-regulated the pain-signaling towards the brain. The pain was no less real.