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[Lisabackpain]

I haven’t posted for a while. I have eventually found out that I have stenosis of the spine, two severe bulging discs, nerve issues affecting the left leg. SI joint distinction and B 12 and folic acid deficiency and now restless leg syndrome. Some days are manageable and some are miserable. Anyone else have experience of these issues that have any advice or tips. Mostly my restless legs are driving my crazy, it feels like breeze blocks put in my legs filled with itching powder and severe leg and foot cramps. Any advice stories or tips very welcome.

[Bananas5]

There is a RSL forum here which may give you some advice

x

[Hidden]

Join the club ... I've been in bed with TENS machines on legs for 2 days driving me nuts...I'm gonna trick those nerves (in my head) ..trying to do my back and SI..fiddley need a friend to help 😕...pain management all of the techniques. .relaxation. .! I use a ton of physio tape ...know you limits 😕..all pain relief x

[Hidden]

Hi

I'm sorry you feel so rotten. Is there any chance you could have pain injections? Please take care. Love and hugs Lynne xxxx

[Lisabackpain in reply to Hidden]

I have had steroid and long lasting anaesthetic infection in my SI joint but fell down the stairs a week later so not sure if it even worked due to the extra pain and having a bad concussion xx

[Hidden in reply to Lisabackpain]

I'm so sorry you are struggling so much.

It's horrible being in pain, I've got about 15 conditions which all give me pain. Love and hugs Lynne xxxx

[Hidden]

Hi , you said it started after car crash 2 yrs ago did you have whiplash , have you had mri scan of your neck or have you seen a neurologist , if you haven't had scan you would be better of asking for a full spine scan , you can have pain in lumbar spine had it can come from your neck, if you want to ask me anything regarding spine if I can help just ask.

[Amk31]

I am sorry to hear. Do you need any surgery?

[johnsmith]

See an Alexander teacher. Muscles are likely to be applying pressure to nerves. You probably need to modify your posture both walking and standing. This is for you to investigate.

[Amk31 in reply to johnsmith]

Hi John,

What are your thoughts on cbd oil and kratom for managing the pain?I have been looking into these.

You seem to have a wealth of knowledge in managing pain.

Amk31

[johnsmith in reply to Amk31]

I have a great deal of knowledge on physical methods for handling pain. I avoid drugs. So you have to rely on the advice on others in regard to this issue.

My take is that pain killers mask pain and so mask any damage we may do to the body when we undertake movement. This causes increased requirements for pain killers in the long run.

Everyone has a human microbiome which is variable. This will act on drugs in different ways. This means that a person must investigate the way it effects themselves. They cannot rely on the effect in someone else being the same in themselves.

[Amk31 in reply to johnsmith]

Yes you are right 🙈it masks the pain. Just bloody complicated. Sigh.

There aren't many Alexander techniques practitioners in ireland. However, I have been to rolfing for structural sessions and he is also doing cranio sacral therapy as well. For him, this is what manages his pain and is pain free. However it didn't do much for me.

I've tried many therapies;

- rolfing

-physio/strength training

- acupunture

_ chircopactor

_homeopathy

_naturopathy

- tens machine- have a little scianticalm machine

- hot/cold therapy

-massage/sports massage

What i have learnt body doesn't heal really once damage is done. You read on internet that pain can be managed but only on forums etc that you learn the real truth.

[johnsmith in reply to Amk31]

Thanks for the reply. I do several physical therapies in parallel. No one physical therapy I do works on its very own. When brain is tired everything is in danger of collapse so I have to work to catch catnaps to allow the brain to rest.

The damage I have is permanent. All I can do is manage it and continually learn and develop new ways of trying to do so.

On this web page is a pod cast onby someone who is both alexander teacher and Feldenkrais Method which you may find interesting. It is 28 and half minutes long. It gave me some food for thought.

bodylearningblog.com/zen-an...

[Amk31 in reply to johnsmith]

Thanks for the above. Will look more into.

It's tiring trying to quieten the mind. Mind never shuts up and all ya can think about is the pain.

Reading a lot into stem cell and gene therapy so who knows if this is the way forward.

At moment i feel like body is misaligned. Here is hoping for lotto win.

[johnsmith in reply to Amk31]

Thanks for reply. Never try to quieten the mind. The mind is as it is. The mind is designed to be noisy. With the right meditation practice the mind quietens. Trying to quieten the mind is adding to the noise and can be dangerous. Just observe and notice.

I also discovered this website article "Pain Without Suffering"

tricycle.org/magazine/pain-...

Has an input by Jon Kabat-Zinn a pioneer in the use of mindfulness to treat chronic pain and illness.

[Amk31 in reply to johnsmith]

Thanks this is interesting. I have always been bad at this kind of awareness even when i was healthy. I could be with a bunch of monks and tryinh to mediate. I would still try and chat 🤣

If you have Netflix, watch the documentary heal. I think you would find interesting power of the mind and placebo effect.

[TheHud]

Same here, Neurologist has just had another chat with the neurosurgeons, they have once again said they will not operate, too many other problems, too close to brain stem, any excuse. Even though the cord compression is causing problems and the radiculopathy has now moved on from severe pain to numbness and loss of use. Only saving grace, eventually nerves die off or give up the will to live and the pain eases off. Lyrica helped initially, just in time, saved my life. Tens set the spasms off, probably because I had it set to kill levels I now take topirimate, helps with the occipital neuralgia and the arm spasms also boring paracetamol and am waiting for an appointment at the pain place to see what options we have left. I have problems with meds and sensitivities, low doses work well, but then I start to react. Opioids don't work at all apart from causing rashes.

The calf cramps are killers. Topiramate has helped keep them under control too, but its a funny drug to get used to and some weird side effects stay. Benefits outway it though and I get benefit on a very low dose.

The general consensus, thanks NICE, is that unless you actually have bruising on your cord, odema, damage showing on MRI, if you can get a timely MRI, they do not operate. It OK for you to lose the function of all sorts of body parts and to become disabled as long as you can still still piddle. Of course by the time they will operate you probably have had enough and are in no condition to survive an op, so they can avoid doing one that way.

So much for prevention and trying to keep people functional and useful lol

[waylay]

Me too. One of the things I find really helpful is to make sure that I keep moving. I get up and stretch as often as possible (sometimes every half hour). My pain clinic gave me a set of stretches. Exercise helps, if you can do it, obviously. TENS, heat, ice, distraction, mindfulness, etc. can all help, but often meds are necessary too.

[Amk31]

What is bemer?

[Amk31]

Thank you i will look into it. Another thing which I will look into is infrared therapy.

[Amk31]

Dublin in ireland. How about you?

[TheHud]

Lol, thanks but my circulation is way too fine as it is. Thats part of the problem. I could do with it being a bit sticky and rubbish

[Amk31]

Thanks I will look into this.

[Busterjoe]

Hi Lisa l have stenosis of the spine too it started about 18 years ago l first had a decomposition on the spine which did not work , that was taken out and then l had a spinal fusion but unfortunately it has not helped l suffer severe lower back pain and severe pain in my buttocks. When l Walt the pain gets severe after a few yards and l have to sit down to relieve the pain, if l knew the outcome of the spinal fusion l would not have gone through with the operation the recovery took about 7 months to recover but the pain and walking is no better