Crps

[joannac13]

I have crps and am on no pain meds, all the pain meds suggested are epilepsy meds unfortunately I am epileptic and can not be given any more. No one seems to be able to help and I am in so much pain!

[Bananas5]

When you say all are epileptic meds..are you referring to Gabapentin and Pregabalin.?

These are the 2 epileptic neds but many more are not.

What have you been offered?

x

[joannac13 in reply to Bananas5]

My neurologist doesn’t want to add in any more epilepsy meds and that is all the crps pain clinic has offered.

[Bananas5 in reply to joannac13]

Go back and tell them you need pain relief.

There are plenty of alternatives to epileptic meds.

Sadly though with CRPS much will be trial and error.

Have they offered you a Pain Management course? This can include alternative therapies such as acupuncture, exercise, swimming and self management. Learning how to pace yourself.

x

[joannac13 in reply to Bananas5]

I am waiting for another pain clinic appointment, hopefully I might get something then.

[Bananas5 in reply to joannac13]

OK but appointments are so rare and long waiting times.

But Good Luck

x

[joannac13 in reply to Bananas5]

Thank you

[joannac13]

Thank you.

[Bananas5]

Pot oil?

You mean cannabis?

x

[joannac13 in reply to Bananas5]

Did wonder!!

[Bananas5 in reply to joannac13]

Waiting for Pinky2233 to reply!

You can use CBD oils...legal in UK and many people find them helpful.

Can give you loads of info if you like but won't bore you if you aren't interested!

x

[joannac13 in reply to Bananas5]

Thank you, but will see what the pain clinic have to say(eventually)

[Bananas5]

Pinky2233 can you remove this post please..it is advertising

x

[joannac13 in reply to Bananas5]

Not sure how, sorry

[Bananas5 in reply to joannac13]

Not you!!

x

[joannac13 in reply to Bananas5]

Realise that now!! Sorry having a moment.

[Bananas5 in reply to joannac13]

Smiles

x

[Lexidra]

I am on Longtec for CRPS cause I hated the epileptic drugs, it's a form of morphine which as long as you are taking the lowest dose that you can take to ease the pain is not addictive. Hope this helps, CRPS is a nasty condition with little relief but with Longtec and pain management it can be managed.

[joannac13 in reply to Lexidra]

Thank you I will certainly look into it. I am getting fed up with chasing help for pain meds because I am already on epilepsy drugs I seem to have very limited options(or so I am told).

[shortandround in reply to Lexidra]

Sorry but that isn't true, longtec is oxycodone and stronger than morphine. Generally it is considered more addictive than other opioids

[Lexidra in reply to shortandround]

Only if you take more than is necessary to control your pain, this has been confirmed to me by every doctor and pharmacist that I've been to because I wanted as much info on this drug as possible because I was overdosing so had to decrease my dose which was very difficult and I did get withdrawal symptoms so I'm fully aware of how addictive this drug is if you overuse it but it is brilliant if you take the correct amount for your pain.

[Lexidra]

Another drug is Baclofen which eases muscle spasms and Tramadol but I don't think this is a very good one to be on long term. I take extra meds when I'm really bad such as: Clonazepam, Diazepam, Codeine, Shortec (short acting morphine in the Oxycodone family, Longtec is the long acting one) and Paracetamol.

[ssdw1958]

Hi another person who can’t sleep it is now 3:some 53 a.m. I am wide awake I can’t stand this I took a Tylenol pm only one it did Work some what but I know this sounds crazy but I really don’t like taking medicines even they I am on so much now.

Ok I am going to try to sleep 😴 now cross your fingers LOL

[Haylou]

Hi I’m sorry that you are struggling to manage the pain. I too suffer from complex regional pain syndrome. Last year I had a spinal cord stimulator implanted to help manage the pain but unfortunately I still get flare ups that can’t be managed by this device. I try to avoid taking medication as often as possible but if I do I normally take codeine. Unfortunately there is no quick fix answer you just have to do what makes you comfortable, I usually try to have a relaxing bath with a bath bomb as it soothes my arm. Avoid any materials or other triggers that might aggravate the pain. I know it’s not easy but try and get you body to relax as I find that the tenser I am the more pain I’m in.

I hope this helps

Good luck

[crpsSucks]

Hi, (ignore my username 😃). I was actually glad when my condition manifested itself physically (no one believed the extent of the pain).

You need to get the Pain Specialist and Neurologist to work together, otherwise you'll get bounced between.

There's other options than Gabapentinoids. Such as Amitriptyline (atleast it'll help you sleep), anti-inflammatories, creams (more NSAIDs, capsicum). Plus Opioids, which seem to be criticised by the media and politicians at the moment (like either has a F'ing clue), but they are very effective.

If the pain gets exceptionally bad, go to A&E (just because you have a chronic condition doesn't mean you can't get treatment like everybody else).

How does the condition effect you, is there a part of the body that is the root cause? CRPS is a bit of an umbrella term. For or a couple of different conditions, plus no idea. It might be a good idea to see a Rheumatologist, rheuma is Latin for river, e.g. pain that flows (ring any bells?).

[joannac13 in reply to crpsSucks]

I have had two foot operations first one no problem after the second I developed CRPS. The pain is so severe it’s now started to “climb” up my ankle so I am becoming worried. I have just seen the Neurologist but unfortunately he has taken me off Amitriptyline he says it has lowered my medication threshold therefore increasing my epilepsy seizures.

[crpsSucks in reply to joannac13]

That doesn't sound good (another reason to get the to talk to each other).

Mine normally travels down my leg from my knee to my foot, and other directions/ places when it is bad.

You may want to try Lidocaine patches if it's quite a localised area.

Clycat: Just seen your post. Very true about suffering in silence!

[shortandround in reply to crpsSucks]

Tricyclic antidepressants and tramadol are a no no in epileptics.

Opioids have many risks and side effects but they can help. Oxycodone and methadone are generally very good for crps.

[Lexidra in reply to crpsSucks]

Nope I totally agree with your username, CRPS completely sucks!!! I now have it throughout the whole of the right side of my body, I can't walk properly anymore I haven't worn a bra for three years cause they hurt too much, I can't wear certain materials next to my skin and I can't wear Jewellery on my right arm or hand (to be fair I've overcome this by having tattoos to make my right arm look prettier). I've been offered the spinal cord stimulator op but I'm too scared to have it. I hate my life atm, it is such a struggle to stay positive!

[Clycat]

Hi, I also have crps in foot and ankle. Also couldn't take gabapentin etc. Nortriptyline saved me (amitriptyline works for others), lidocaine patches may also help you, there are other options too. You need to talk to someone urgently about pain relief don't just suffer in silence. Jo

[Lexidra]

Also I'm not disputing that it's not addictive it is extremely addictive, what I'm saying is that it's not addictive if you are on the lowest dose you need for your pain. This stuff is like heroin to come off if you start to abuse it by taking over the amount needed for your pain and that's where it becomes addictive, that sounds like a weird statement but I'm going by what has been said to me by many healthcare professionals and from my own experience taking this medication.

[shortandround]

Funny they told me they don't prescribe it in the hospital and tried to change me to tapentadol.

Do you mind me asking how much oxycodone you use a day ?

[Lexidra in reply to shortandround]

I fell recently so I've had to go up to 40mg twice a day but normally and when I've recovered I will go back to having 20mg twice per day. Basically I started too high cause they put me on loads in hospital (80mg twice per day) but that's when it started getting addictive so I had to reduce it slowly in hospital cause it's like coming off heroine at that kind of dose, I managed to get down to 10mg twice per day but that was too low so I went up to 20mg and that's how I knew it was the lowest dose I could cope with. I don't suggest you do it that way I suggest you do it the other way start small and only go up to where you can just about cope. I still have to use extra meds on a bad day. Don't take too much it's really important you stay as low as you can, it does really help at low levels. Good luck x

[shortandround in reply to Lexidra]

ThanksI was on 120mg day oxycodone and managed to reduceto nearly half so really annoyed the pain consultant said oxycodone is horrificthey don't use it at the pain clinic and that if I wanted to be treatedthere I would need to go on tapentadol. Of course I stayed with my privatespecialist and local pain clinic and saw a specialist centre some distance away.

[joannac13]

Well I’ve managed to get hold of the neurologist at last. So I am now hopeful that my Gp will now be happy to prescribe me with some painkillers. I am hoping that I will be a little pain free over Christmas!! Fingers crossed