Hello I am new to this today

[Les_r28]

I have been diagnosed with chronic regional pain syndrome following surgery on my foot and I am devastated as there is no cure and I am interested if anyone tried scrambler therapy particularly with Mr khan in Ireland?I would love to hear from others with this condition and really appreciate any advice help you can provide me

[Iliketojugglejuggle]

Have you tried physical therapy? It’s still fairly early after your diagnosis so as long as you keep the limb moving and blood flowing you should get better with time. What were your symptoms after the cast came off?

[Les_r28 in reply to Iliketojugglejuggle]

Hi thanks for your replyI can't remember all my symptoms when cast came off as that was a good few weeks ago but my skin temperature key changing I seem to have trembles in my leg and popping sensations

I thought I may have got gout or thrombosis so back to hospital

I have had nerve tests done and they did an MRI on my back as I was getting pain and pins and needles below the knee and thought I may have sciatica

I am having ultrasound on my calf next week and seeing the vascular consultant, my consultant wants to rule out everything else but my skin keeps changing colour and swelling even when I am just sitting

I am trying to keep active I used to go to the gym 5 times a week and finding this extremely hard

I am also doing contrast bathing a few times a day for blood flow

If you can offer and more advice on treatments, meds or anything at all to keep my symptoms at bay I would be so grateful

Thanks again

[Iliketojugglejuggle in reply to Les_r28]

I had a deep cut on my shin in late January, I’ve been to 6 or 7 different doctors by now not including physio and one said likely diagnosis is CRPS, but he didn’t even examine me himself, he just saw notes from his PA. Rest of doctors don’t think I have it. I have some of the symptoms of CRPS, predominately pain and sensitivity but not the classic red swelling and severe discoloration, hair loss in area, etc. Regardless they put me on gabapentin and duloxetine, I’ve yet to start duloxetine and taking medical cannabis for now. I’m in PT and that helps to keep my leg moving and mobile. Also taking B vitamins (b1, b6, b12), magnesium, fish oils, d3 and multi vitamin.

Whether it’s a nerve injury or CRPS treatments are pretty much the same , you’re in early stages so as long as you’re proactive you’ll be okay.

[Les_r28 in reply to Iliketojugglejuggle]

Thanks I don't know which it is but consultant seems to think it's the same as damage to small nerve fibresI am trying to continue as normal as much as possible at the moment with limitations

Thanks

[Iliketojugglejuggle in reply to Les_r28]

Yea good to be as active as possible, I rested too much early which is slowing my recovery I think. There is something called small fiber neuropathy, it has similar symptoms but typically is from things like diabetes or toxin exposure, or alcoholism. Also if not from trauma or injury it occurs on both limbs, typically hands or feet. When was your surgery?

[Les_r28 in reply to Iliketojugglejuggle]

Yes I saw that and have been reading about it toWas concerned re the alcohol neuropathy not that I drink loads but do have a few drinks most weekends Friday Saturday and Sunday which I have now cut back on

I have have all my bloods taken too which was for thyroid, MS, gout basically they have done a full blood check and nothing came back from that

My surgery was end of January and symptoms started about 10 weeks later

My surgeon said small fibre damage is more or less the same as crps

It's all quite confusing but have HDD nerve tests done, MRI and due to get ultrasound on my calves and also seeing the vascular surgeon and they just want to rule everything else out

Thanks and more information is so helpful

[Iliketojugglejuggle in reply to Les_r28]

Yes, sounds like you and I are on similar timeline since my injury was at end of January but symptoms of some kind of nerve issue started showing up almost right away for me, within two weeks I’d say. What is HDD nerve test? I had a NCV, nerve conduction study. Doctor said only way to test for small fiber nerve damage was a biopsy but they don’t typically do it. My pain management specialist suggested compression socks, which do help, I’d suggest getting a good pair of those.

[Les_r28 in reply to Les_r28]

Sorry I meant had nerve tests not HDD testsMine were simply nerve conduction Tests which came back normal but that only checks the large nerves and can't do the smell fibre nerves unfortunatelyWhat compression socks have you opted for I believe there arw 3 different grades and do you wear these just for bed or during the day to ?

Thanks 👍

[Iliketojugglejuggle in reply to Les_r28]

I didn’t get a special grade for the compression value in socks, just generic ones. I wear them when I work which is mostly sitting, and when I go out. Sometimes it feels better to just take them off. I don’t sleep with them. Curious, when you got your diagnosis what did the doctor tell you to do?

[Les_r28 in reply to Iliketojugglejuggle]

Nothing really I have been referred to the pain management teamHe said they would need to advise me about everything

Thanks

[usr2022]

So, the (current) name of it is not chronic... but Complex Regional Pain Syndrome.

It can become chronic too, but your situation seems recently developed so my guess is you have not reached the chronic phase yet.

Please don't believe all that nonsense that is written online that there is no cure. I am recovered (been ok now for more than a year).

Did they identify your nerve damage? CRPS is currently classified in two types:

- type I - where they can't find an obvious nerve damage

- type II - where the nerve damage is identified

There are doctors that focus on this syndrome that now think both types are in fact caused by nerve damage, but due to limitations in current medical investigations, they just can't identify it in all cases.

Here is a good description:

ninds.nih.gov/health-inform...

[Les_r28 in reply to usr2022]

Thanks for your replyI am so pleased to hear you are a year recovered

Can I ask how long you had this for?

My consultant advised that it will be to the small nerve fibres as where I had my foot operated there were no nerves cut so not sure what category that puts me in?

Does everyone go through all the phases and reach chronic, is there a way to prevent this happening?

Do you have any advice for me in terms of treatments, meds or exercise? I would like if possible to do anything I can at the early stage to try and get myself better

I used to go to gym 5 days a week and struggling with this

Thanks for your help

[usr2022 in reply to Les_r28]

I had a bad wrist fracture back in Dec. 2019. Took me 2 and a half years to recover and get rid of last pains, gradually and with a lot of physiotherapy and various treatments.

I agree that physiotherapy is vital for recovery.

Have a look into High Intensity Laser, I can provide some more therapies, if you can describe more your symptoms

Did you have a cast (was it tight)? Sorry, what is a row straightening operation?

[Les_r28 in reply to usr2022]

hi

i started getting cramps in my calf when my cast was on my foot and thought it was just because i couldnt wiggle and stetch my toes

i am still getting calf pain and trying to do exercise to releive this but not working too well

it was a toe straightening operation a bit like a bunion removal, can you please send me some links for high intensity laser and anything else you can recommend

thank you

[usr2022 in reply to Les_r28]

Careful , there are two types of lasers used in physiotherapy LLLT and HIL. This site gives a good explanation about the difference between them:

promotionphysio.com/high-po...

Some more sites:

btlnet.com/high_intensity_l...

high-intensity-laser.co.uk/...

healthcentral.com/pain-mana...

physio-pedia.com/High_Power...

[usr2022 in reply to usr2022]

There's a number of supplements that could also help.

Antioxidants like:

- high dose vitamin C (>500-1000 mg/day for at least 45-50 days) ncbi.nlm.nih.gov/pmc/articl....

- Alpha Lipoic Acid 600mg/day

Anti-inflammatory like curcumin (extract of turmeric);

B-vitamins also help nervous system recover

Magnesium (malate, bisglycinate, citrate etc.) - dose per day that was used for pain in studies was 600 mg

[Les_r28 in reply to usr2022]

Thanks againI am already taking vitamin c and vitamin b supplements and calcium with vitamin D but will look at the others

Your video link doesn't work could you send me the URL instead please?

Which laser did you use please and what benefits did you get from this?

Really appreciate all your help

[usr2022 in reply to Les_r28]

I've had both types of lasers, only found out about HIL much later. I've also used MBST, for healing and pain. I've tried many other therapies, but those were not helpful.

About magnesium, url won't work on this site so on youtube search:

Magnesium and Pain by Andrea Furlan MD PhD

[usr2022 in reply to Les_r28]

do you have allodynia? bone issues?

[Les_r28 in reply to usr2022]

No I don't seem to have issues touching the area but have swelling, skin temperature change and discoloration with feeling like foot being squeezed and lots of tingling pins and needlesThanks

[usr2022 in reply to Les_r28]

That sounds like some nerve damage though, not necessarily a severed nerve. Scar tissue can also irritate nerves constantly.

Both HIL and MBST help with inflammation and healing. LLLT I don't think is useful in your case, since it acts only at surface level, it won't reach deep into tissue where your problem is.

Here I posted some more useful medical links:

healthunlocked.com/painconc...

The first video there, at least... dr Tawfik's talk about CRPS and MR neurography to detect nerve damage.

[Scotsman53]

I was diagnosed with CRPS five years ago, if I'd known then what I know now my life during that time would have been very different. It seems generally agreed that the earlier the diagnosis, the easier the cure. However, I've now had over a week completely pain free and I'm very optimistic. Here's a great list of resources: defeatcrps.com/resources/

[Les_r28 in reply to Scotsman53]

Hopefully more pain free weeks to come for you

[Scotsman53 in reply to Les_r28]

Thanks. Please note, that resource list is for a specific approach to CRPS that for me is the best way to tackle it. Physio is good though better if they're a chronic pain specialist. The only medication I'd recommend is capsaisin. Electro-acupuncture (from pain management people) helped me at one stage.

[TiredRose in reply to Scotsman53]

I'm sorry to butt-in to the thread like this; but I found this site about half-an-hour ago, awake early in pain, after seeing Foot Surgeon yesterday, who has referred to Pain Management Team. He gave me a script for Capsacin Cream; I went to 5 Chemists (big and small) in Salisbury, Wiltshire, and all said unavailable due to manufacturing issues. Can you get the Cream easily in Scotland? Will the Pain Team - when I get to see them/how long a wait I don't know but referral is Urgent - have their own source, do you think? Sorry, to sound as though I'm clutching at straws but the surgery was hopeful as a step of re-building me after a Road Traffic Accident 19 months ago and now CRPS2 is the last thing I need to have to manage!

[Scotsman53 in reply to TiredRose]

Sorry but I can't help here, I stopped using it months ago (no longer need it), and in my case at least the pain team didn't even give me a prescription, just told my GP to do it. But speak to them about it, maybe there's something they can do. Good luck!

[TiredRose in reply to Scotsman53]

Thanks for letting me know - healthcare does vary throughout UK, availability/density of population, and sometimes it is just good luck!

[Les_r28 in reply to TiredRose]

HelloI had foot surgery 6 months ago and have just turned a corner after having several issues with my foot and start if crps however I saw a physio who carries out something called accelerated recovery and it's been the best thing ever and had got me nearly back to normal

This is after having nerve tests done, MRI scans, ultrasound plus many other things

I can't recommend it enough please try this somewhere local that knows about this

Thanks

[TiredRose in reply to Les_r28]

Thank you, Les, glad you have turned that corner - life is tough in pain. Did the Accelerated Recovery happen as a Pain Team referral or something you find out about yourself? Again, I guess different Healthcare Trusts will offer an approach mainly the same techniques ... but there could be variation between city and country hospitals.

[Les_r28 in reply to TiredRose]

No it was private and was recommended by a consultant at the hospitalTheir physio were useless

Hope you get better soon 🙏

[Les_r28 in reply to TiredRose]

platinumppt.co.uk/

[Les_r28]

Thanks for your replyCan you offer advice for any medicines, treatment including physio that helped you?

I want to try and much as I can at the early stages if possible

I am currently taking 10mg amitriptyline as it's so early being diagnosed

Thanks again

[emmamom]

My husband had it. It CAN BE controlled and disappear with FAST, PROACTIVE treatment. His popped up after surgery on his ankle. NERVE BLOCKS RIGHT AWAY. Then every so often. And, lots of high dose pain meds for a few months. Along with neurontin. THIS HAS TO ALL START IMMEDIATELY. Nerve blocks don't need to go on forever but meds do for a few months. Also, EXERCISE even though it hurts to keep blood flow to the area, which is super important to minimize muscle loss. We are in the USA, but if you need or want to talk to my husband, he is happy to help, if he can.

[Les_r28 in reply to emmamom]

Thanks I am keeping as mobile as possible and due to see pain management team next couple of weeks but can't go anything until they see meAppreciate any help you can offer

Thanks

[Les_r28 in reply to Les_r28]

Hello againJust wanted to ask you did your husband have swelling skin colour changes and temperature change to skin?

If do how did he get this all back to normal?

Thanks

[emmamom in reply to Les_r28]

yes, that is normal because blood flow is reduced. got back to normal after using blocks and pain meds and the CRPS is under control.

[Les_r28 in reply to emmamom]

Hello againCan you advise what nerve block treatment you were given was that injections and do you know what of ?

Also what medication was he given please?

Any more good information please send to me

Thanks Lesley

[emmamom in reply to Les_r28]

It was just a standard nerve block to the area where the pain was--the shots were in the spine. Sorry, I don't know the specific name. Neurontin was one of the meds. The others were the strongest prescription pain medications.

[Les_r28 in reply to emmamom]

ThanksIn the UK they do t have those meds and only do injections as a last resort I believe

We are always way behind the US which is unfortunate

Thanks again

[usr2022 in reply to Les_r28]

Gabapentin-Brand name: Neurontin nhs.uk/medicines/gabapentin

To be aware if you decide to try nerve blocks (although they are more for diagnostic purpose): rcoa.ac.uk/sites/default/fi...

[emmamom in reply to usr2022]

I agree about the risks with nerve blocks but I believe they saved my husband from lifelong extreme pain. Everything I have read about CRPS is that immediate and aggressive treatment is the only thing that "cures" it and prevents progression to other areas of the body and emaciation of the affected areas. Pros vs cons analysis. We have a friend who has it and has been bed bound for a decade because he wasn't treated immediately and aggressively. Just want to help as much as possible.

[usr2022 in reply to emmamom]

emmamom

I agree that starting recovery and rehabilitation as soon as possible is very important. But I don't agree with the aggressive part.

I recovered without any nerve blocks, there are other ways too...I think one should be aware there are risks with these invasive interventions, I am also on other health forums where people have shared their less successful experiences with nerve blocks, which led to further nerve damage. It's important to be aware and discuss with your doctor also potential side-effects.

[emmamom in reply to usr2022]

absolutely. and, although this was by far the medical consensus when this all happened with my husband, it has been many years since he had his episode. so, there may be other, new, safer methods to deal with it now.

[Les_r28]

Thanks yes I know gabapentinThey have put me on amitriptyline 30mg but I haven't seen pain management team as yet

Regards Lesley

[Les_r28]

Thanks I will take a look👍

[AntonioOzele]

Look no further than Springdale Clinic - a leading medical facility that provides top-notch care and treatment to patients of all ages. springdaleclinic.com/

[Les_r28]

HelloThanks for messaging but please can you tell me where this is as I live in the UK

Thanks