Help and support also dwp issues

[Richymclaren98]

I am 31 and I have cprs in my left arm and an undiagnosed Condition causing cronic pain in both legs and when I am about to drift of to sleep i twitch also i go very hot and sweaty. I need some but I don't know where to turn I am depressed and I worry about my health money and my life or lack of one.

[dianadoors]

Hi Richy,

I also have CRPS/chronic pain.How does yours manifest itself?Did you have a fall or an injury ?Are you able to work?

[Steve49 in reply to dianadoors]

Hi Diana.

I have CRPS (undiagnosed) how are things with you today ??

How is your pain ??

What are you on meds wise ???

Steve.

[dianadoors in reply to Steve49]

I stopped taking Pregabalin etc as I can't function on them.I now take CBD oil,which has cannabis goodness without the highs

[Steve49 in reply to dianadoors]

Hi.

Have you stopped talking all of your meds??

I have started using a Medipen with CBD with Oils.

This seems to make a difference.

Steve.

[dianadoors in reply to Steve49]

Where do you get that?I am spending a fortune on the oil.

[Steve49 in reply to dianadoors]

Hi,

Google "Medipen" and that you to the site.

Please let me know if you have any problems.

[Richymclaren98 in reply to Steve49]

No I take 160mg of mst morphine doesn't really do much

[Steve49 in reply to Richymclaren98]

Hi,.

I was on Morpine Patches but they did nothing for my Pain.

I'm now on Transtec Patches but they don't do anything.

[dianadoors in reply to Steve49]

Thanks for that Steve I'll ask my GP!

[Richymclaren98 in reply to dianadoors]

Can you get that in the UK if so where

[Steve49 in reply to Richymclaren98]

I get mine on Prescrition from my GP.

[Richymclaren98 in reply to dianadoors]

OK I fell threw my garage door window and severed all my tendons my ulnar nerve and ulnar artery I almost cut my hand. Now I get most the pain in my hand it burns and twitches then I get pain around my elbow and upper arm aches the pain is always there never stops and it pisses me off once every six months or so i have to get an £20 spot of weed or I will go nuts

[dianadoors in reply to Richymclaren98]

Sorry to hear that !Yes,I daresay the weed helps!

[Reykua]

Hello Richymclaren98

I particularly love your name because I'm a big F1 fan and a bit of a petrolhead.

Having said that, I hope you're feeling slightly better today and I'm really curious as to how long you've been experiencing these problems with your legs.

Does the pain in your legs prevent you from walking or greatly impact your mobility? You mentioned you get hot and sweaty - is there any swelling? What has your GP said so far about your condition and what sort of tests have you had done?

Sorry to be so nosey but your feedback may help us to provide more targeted support and there may be others who have also experienced similar symptoms on the site who may be helped by your experience so you can share insights or potential remedies.

Finally, I can fully understand your frustrations with pain management and hope your 'sweats' aren't as a result of your meds - is it ok to ask which meds you're on?

Hoping to hear back soon.

[Richymclaren98 in reply to Reykua]

Thanks for your help so far, when ever I have to pick a user name I use some variation of richymclaren cuz I am massive mclaren fan I love f1 and I powered threw my pain to go to silverstone for the race. I have cprs as a result of falling threw a glass window i severed all my tendons my ulnar nerve and ulnar artery I almost cut my hand off and that resulted in the cprs in my arm. Ok the other problem I get pain in my legs and my hands and feet tingle like pins and needles and I twitch when I am about to drift of to sleep this all started about 18 months ago and has been getting worse, I have been on tramdol max dose for eight years but it doesn't do anything anymore at all. So I have been put on morphine for my arm I am at 80mg twice a day mst. I have had full blood test and everything is fine nothing shows up and there is not swelling in my legs. I can deal with pain it's the fact it's getting harder to walk long distances Silverstone almost killed me but worth it.

[Reykua in reply to Richymclaren98]

Wow, thank you so much for your reply. I'm so jealous. I would have loved to go to Silverstone - or any of the Grand Prix races around the world for that matter but unfortunately, my body won't let me at the moment. However, I've even grudgingly invested in Sky F1 (I'm still upset with the Beeb for selling it off).

Despite having one of the best drivers on the grid (Alonso) and one of the most consistent (Jenson), I think your team has had a pretty awful couple of years with Honda and I'm really hoping they can at least take the fight to Red Bull and Ferrari next season.

So about your arm - What a horrible injury - I actually cringed when I read it. It must have been very painful and has obviously taken a while to recover from. Are you able to use your arm effectively (even with the pain) or has it impacted your ability to touch, hold, write, carry and move things - especially heavy items?

With regards to your legs, apart from the blood tests and lack of swelling, did you have any scans or an MRI? I feel this may have give a clearer idea of what's going on.

Sorry to sound so perplexed but I've been on Tramadol for a while as well and had to gradually weaned myself off when it started to lose its effectiveness and I reacted poorly to the morphine patches so my pain management is currently a bit hit and miss - mainly more 'miss with mindfulness'.

I look forward to hearing back from you about the Scan/MRI.

[misty14]

Hi richymclaren

Sorry to read how tough your finding it with crps and how it's affecting your life. Contact Citizens Advice who will run a benefits check to see what help you could apply for. They will also help you fill the forms in as they have to be done in a certain way. This specially applies to pip which you may be able to try for. They also have a good website with lots of helpful info. Worth a look.

[deejames]

Hi. You have been asked already about medictations you are on so I won't repeat that. I think everyone with a chronic pain situation which impacts on their life is going to suffer from a lot of worries and depressions. It can extend in to depression about other things apart from the pain.

Have you been to a Pain Management clinic ? They can provide stratagies and techniques for managing pain and dealing with the feelings and emotions that are engendered by the loss of the life one used to have. They help with acceptance and through acceptance and a more positive outlook the pain can be lesson ed in its effect.

Coming onto a forum like this is a positive step even though you may feel you have reached the end of a line by contacting strangers. I think you will find help and support here. I certain,y have and I have been near to suicide a couple of times.

Dee

[madmoms2]

Hi there. I'm sorry you're in so much pain and feel so low this is an awful condition. I've looked after a girl for three years who lived with me and she had CRPS in her right foot. I'm not sure if you're aware but it can spread throughout your body. I'm wondering if the pain in your legs is secondary CRPS to your arm. The sweats will be as well. Is it possible to get social services involved. They can help with getting your finances sorted out you should be able to claim PIP care and mobility allowance and also ESA. If you can get CAB involved they will do all your paperwork for you but you must explain your situation as to how it is on your worst possible days and how limited you are. Hope this helps a little. Huge hugs.

[Muddle]

Sorry for your pain could you have fibromyalgia if in uk could claim DlA to help

[Clycat]

Hi Richy,

Are you newly diagnosed with CRPS? I've had it for about 3 years now on my right side and have always just assumed that the twitching, overheating and sweating are just all part of this wretched condition.

As suggested above, get all the help you can and learn coping and distracting techniques to help you through the worst bits. I knit and count stitches, but you'll find the right thing for you. Desensitising the affected limbs has (so far) been the most helpful thing for me - the physiotherapist encouraged me and was a great help. He gently massaged my left leg and foot weekly and I had to rub body lotion in every hour that I was awake to get used to the area being touched. It was torture to start with but I am so grateful for it now and would recommend this to anyone with CRPS.

Best wishes,

Jo

[Steve49]

Hi.

Yes I also have undisclosed CRPS, causing Chronic Pain down my right side.

Please contact me if I can offer you some help???

Steve.

[Db123]

HI

Firstly any one can claim pip if the symptoms of an illness directly affect your ability to function normally, obviously this does, pain, fatigue, depression; shall i go on?.

have you called the DWP and started the process? can you supply medical evidence to back up your claim? note.. please get all the back up documents before you get the pip2 form through the post as it is a little exhaustive,, take your time and answer all the questions.

reply if you need help

David

[Dorris59]

I have read about CRPS/RSD spreading to other limbs. It's very important to make sure you see someone who specialises in this to get the right treatment. A lot of pain specialists know very little about this condition. I have read that low dose Ketamine helps. There's also groups for CRPS on Facebook. Try CRPS UK, or CRPS Community (crpscommunity.co.uk), who may be able to offer advice and rcplondon.ac.uk/guidelines-.... Another community is "Living with RSD" where you can share stories, treatments, information etc. I was told by a pain specialist that my mom didn't have this, as you can't get it in head & neck. A kind person off a Facebook group for CRPS told me she had it in her head & neck and was diagnosed by one of the top specialists in the USA. I was also given info that certain supplements help, but can't remember which ones now, but you may well come across those in your search. Another thing that might help though is Turmeric, which has helped many people and animals with pain, though getting a good organic Turmeric is essential as some brands have had the Curcumin removed. DO NOT use pure Curcumin. For much more info on Turmeric join the 'Turmeric User Group' on Facebook, or go to turmericlife.com.au. It was set up by Doug English an Aussie vet and there's lots of info on there for use in people and animals, plus scientific research, which medicines you shouldn't take it with, dosage etc. I hope you find something to help.