Please can some one hear me?

Hello out there. My names Rebecca and I'm 16 years old, and its lovely to meet you. I must admit I'm a bit nervous writing this, as I don't know what people may think, and if any one would understand or help.

I have CRPS down my hole right side, and it effected my walking (so I limb and drag my foot) and I am unable to open my right hand, which as been in a paw/claw shape since 2013, a year after I got CRPS, and Is constantly horrifically painful.

I haven't got much help from doctors and for years I have been bounced around different hospitals and pain management with all Other being the same thing I'v heard a thousand times, like "We cant help you." , "We dont know" , "theres nothing we can do." and the bigest one "You just have to get on with you normal life."

All these thing are easy to say, but they dont acthally help, and I do feel quite isolated and scared by how little they know. I know CRPS inst something you hear every day, but it is out there. and I must admit I'm terrafided because Iv never met some one like me, and I honestly dont know what to do, for at the moment I'm just left in Limbo with the doctors, and I'm Stuggaling so much with try to sleep, as I cant have the covers on my right side as Its too painful, or I just wake up because they pain is so bad. I just dont know what to do, and I could really do with some one to talk too.

So thank you for reading this, and please if you can , please leave a comment, even if its just saying hi , I would love to hear from you. Thank you

Your's Rebecca :)

P.S: Sorry about the spelling mistakes, I really struggle with my spelling and some times grama because I'm dyslexic.

once again thank you :)

80 Replies

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  • Hi Becky

    Sorry to here that u r struggling X

    I have got CRPS IN MY LEFT ARM,hand and fingers

    I had a work accident 6 years ago and the burning pain is worser now !!!! I have got chronic fatigue

    Which causing depression ,anxiety etc.

    It's all about pacing yourself and not overdo things , but it's not that easy to do !!!

    Where are u from ?

    Christine CRPS

  • Hi, Simba

    I'm so happy you replied back, I honestly thort that no one would. And I'm sorry to hear about that, and I know what you mean. If you ever need some one to talk too even to say I when you feel bad, just say hi I will make sure I get back to you. :)

    and I'm from the UK :)

    Yours Rebecca

  • Hello Becky or would you rather Rebecca?

    Welcome along to this forum. Tons of advice from people with a wealth of experience. Always someone around to listen if you have a problem. Need a natter. Or just a rant.

    We don't always have the answers. In fact we rarely have answers but try to pass on our knowledge of most pain related conditions.

    As you will know CRPS doesn't let you lead a 'normal' life. No chronic pain does. You will probably find you need to adapt the way you do things in a way to lessen your pain Pain management is exactly that.

    There are a number of chaps and chapesses here who have same condition as you. Sure they will pop in.

    Gentle hugs

    Pat x the noisy one!!

  • Hello Pat

    Thank you so much for you message it really made me smile. I hope they will it would be nice to talk to some people who have the same/simulare conditions like it. Do you think they will be okay to talk to me?

    And I really dont mind :)

    Thank you so much

    Your's Rebecca :)

  • You are very welcome and don't be so formal - you are amongst friends here.

    Never know who is around but they may well appear. Anything you want to chat about?

    It must be hard being in your teens and living with this level of pain. Sure you will have your own way of doing things

    Another gentle hug

    x

  • PS If you can put CRPS in your title others will know your specific condition

    x

  • Hi Pat

    I'm sorry I don't mean to be I'm gess I'm still getting used to this and it is hard and even worse at the minet as iv got my GCSE re-takes in 4 days time, so really nervouse.

    Thank you again Pat. You a star

    Your Becky

  • Oh pooh you don't need retakes at the moment. All I can say is chin up and good luck

    x

  • Thank you I rrally need it.😊

  • Hi Rebecca

    I'm so sorry to hear about all the pain you're in and the lack of help you're receiving. I don't have your condition, but I am in constant pain myself with sciatica and a bad back, so I do know what it's like to live in constant pain.

    I don't have any solutions, but like Paton has already said, we're here if you want a chat or a rant, and I'm sending you hugs from me too.

  • Hi mumofsam

    Thank you so much for your reply and im really sorry to hear your in pain too, and i'll make sure I send hugs to you and every one too, even if it's a half hug. And if your struggaling I'm always here to talk with you and that gose for every one.

    Thank you so much :D

    Your Becky

  • Hi Rebecca,

    I feel your isolation, I don't have CRPS, but am in constant pain with migraines and headaches, and have arthritis in my foot which causes pain if I walk too much.

    I am sure there are others out there who have CRPS and as Paton says put another post with that in the title and that you are a teenager. Someone contacted me via messages when I posted and we chat regularly, it does make a difference talking to someone who knows what your going through.

    Take care of yourself

    cathy

  • Hi cathy

    Thank you so much for your reply ot really made me smile and may I say that I think your a really brave persion and I will try to write another post.

    Thank you so much

    And you take care too.

    Your Becky

  • oh sweetheart my heart goes out to u...maybe u cud look into sum herbel remadies and maybe accupuncher...i have syatticer so know when it flares up so flipping painful and I.m almost housebound with it....but my friends on facebook and from doing abit of research have told me to start taking something called cal-mag....calcium and magnesium citrate its supposed to help with nerve pain apparently its the way the body absorbs it....so maybe u cud give it try....i am....😍

  • Hey spike punk

    Thank yoy for your reply and it might be worth a try, at the minet it's just trying to find anything.

    I'm really sorry to hear your nearly house bound and may I just say your a really brave and lively persion and you can do this

    Yeah it may take a while but that's life, there isn't a short cut. But we can do it. Promise.

    Your Becky

  • Hi Rebecca I know how u feel I have had crps for the last 6 years so I know we're u are coming from in my case I had to have my left arm and my right foot amputated because mine was really bad don't worry I do not think that will happen to u what type of crps do u have my is type 2 u have to types of crps type 1 is we're u brake u arm or u ankle or if u have a plaster cast put on wrong type 2 is we're u nerves are damage, what type off meds are u on sorry for asking all these questions.

    Best wishes to u

  • Hi yogibe

    Thank you so much for your reply and I know this may sound weird but,it amazing talking with some whI has CRPS like me. So thank so much f9r writing to me.

    To be honest it perfectly fine, there really good question. And to be honest it's a kind of weird story. My start back in november/ December 2012, I hadn't broken or spraised any part of my body, it kind of crept up on me and I find my hand and right side will change diffrent temperaturs ( so hot and cold) I rember once my hand being red hot and in alot of pain and a kind of red colour and my foot being ice cold and Turning purple. Sorry if that so much of a picture. As f9r meds I have none and I haven't had any for years. The last ones I took didn't do any good. Then I was put on a high dose and tat made me wrose. It very weird.

  • Hi Becky.

    Firstly, I didn't spot any mistakes. (I too am dyslexic) I went through a stage when I was about your age of saying sorry for it. Don't! You don't say sorry for being in pain. Just accept there are some words you can't spell and sod the rest. 😁 That's what I did and still do at 32.

    Secondly, CRPS is a lot more common than you think. It's estimated that around 8% of people will experience it in some form in their life.

    To be honest I haven't read the other posts as I'm short on time this morning but I wanted to get back to you. If the Dr's you have seen can't help, you have seen the wrong ones. If your in the UK (or have good health insurance in the USA) I would recommend the Walton Centre. They are a world known hospital for pain and neurological problems. To start off with I ask your GP to refer you to Dr Ganty. He is a pain specialist but he is also a really nice friendly guy. I've never seen a Dr like him. He will assess you and decide if he can help. If not he will send you to someone who can. This hospital does all it can before saying piss off. I have gone through 6 doctors and 2 spinal cord simulators. (I'm just recovering from my second implant that was 2 weeks ago). They have teams upon teams of specialists. Pain is their bread and butter.

    Don't give up, keep fighting! You will see there are a lot of people out there with CRPS and most are willing to help as they know what you mean.

    I hope you get somewhere and start moving on with your life.

    All the best.

    J.

  • Hello badback jonly

    Thank you so much for understanding, and your brillent.

    That dose sound like a good idea, and mayeb they could help, I just wanted to ask if you know where the center is and if there okay to take children/ teenagers as with my because I'm 16 some place can get funny about it,or maybe that's just where Iv been.

    Thank you so much.

    Yours Becky

  • I've been there as a patient for four years. I've gone through a number of trials, implants and doctors. They always pass you on to who can treat you the best.

    It's at Aintree near Liverpool. They have people go to them from all over the UK and the world. When I was just in, last week, they got an outstanding from the cqc. Only the second given to a special hospital.... ever!

    I don't know where you are in the UK, but remember there's always ways and means. You can get travel refunded, patient transport, there's plenty of other options as well.

    Good luck.

    J

  • Thank yoy I will defenly look into it, when will be alittle more of a.problem bit I defenly will.

  • hi Rebecca.

    Firstly, well done for posting. My name is Deborah,I too have CRPS. My upper right side of body is affected. My right hand was clawed for over a year but over the last 2 months I have started to get function back....lain is dreadful but it opens. I have had the gift of being an inpatient at the national CRPS centre in Bath twice now. They have changed my life. They taught me to accept this condition, to pace and how with many months of therapy each day i have reduced the skin allodynia so I can tolerate sheets and clothes. I still am in huge amounts I pain and depression as a result but I do get up out of bed. I am due back into Bath for another 2 weeks to make further progress. if i can help please shout. Take care. Deborah xx

  • Hey Debble

    6hank you so much for your reply and Im sorry to hear you have CRPS too it's so nice talking to some one who's has a simulate condition to me. Your a star, don't stop beliving it.

    I when to bath too, how ever it wasn't very good, I don't know why, it just didn't help and he people me and the other guys with me ( who are all amazing) found it too emotional and didn't find it helped, and it became very uncomfortable.

    Its been lovely to talk with you.

    Yours Becky

  • that's such a shame about Bath. What programme were you on? I know that there are different ones, indeed during my last stay a lady in the pain management course ( different course to me) hated it and left early. I had good experiences and it still benefits me. it's hard hard work but it takes over if I give up. Lots of love

  • Hey Debble

    I was on the adalesent program I think. Abd your right it was hard work and still kinda is. I haven't heard anything from them since abd that was last year.

    Thanks

    Becky

  • hi Rebecca.

    Firstly, well done for posting. My name is Deborah,I too have CRPS. My upper right side of body is affected. My right hand was clawed for over a year but over the last 2 months I have started to get function back....lain is dreadful but it opens. I have had the gift of being an inpatient at the national CRPS centre in Bath twice now. They have changed my life. They taught me to accept this condition, to pace and how with many months of therapy each day i have reduced the skin allodynia so I can tolerate sheets and clothes. I still am in huge amounts I pain and depression as a result but I do get up out of bed. I am due back into Bath for another 2 weeks to make further progress. if i can help please shout. Take care. Deborah xx

  • Hello rebbecca im sharon my daughter sophie is 14 and has crps on her right leg it started in april with swelling on her knee and a burning sensation and then permanent bruising that changes colour every day she like you is in constant pain and dosent sleep that good .She has physio and occupational therapy but to be honest doesnt help but as time has gone on she has learnt that distraction techniques like music or watching tv and drawing is her distraction that is the only thing she seems to be able to do which she learnt herself i hope this is a little help but the hospital hasnt really helped she has done this with love and support from her family as this condition is not understood at all .

  • Hey slsn

    Thank you for replying and I really do feel for your daughter I had abd still have swelling and pain too, I also draw too, I love it even thow it hurts and like her I self tort my self how to draw. Please can ypu tell her from me that she is amazing and never stop doing the things you love.

    I hope this was okay.

    Yours Becky

  • That is lovely that you still try to do the things you love my daughter like you is a fighter and hopefully in time u wont let this debilatating condition stop you both from leading your life as you are both still young take care if u need to talk or shout just let me know my daughter does that most days bless her xx

  • Thank you so much and I will 😁

  • Hi Becky119,

    Idea only - Check you haven't got a vitamin B12 deficiency on top of CRPS, also might be an idea to check your vitamin D too. (effects walking and dragging your foot.)

    Drs are good at missing B12 Deficiency. (though not saying this is what you have, but just to rule it out, ) B12 Def. can be linked to neuro pains, such as foot drop.

    If you do get bloods done, ask for a printout of any blood results and ranges you have done.

  • HI coast walker

    Thanks for the advice, I'll check that our as soon as I can.😊 thank you so much

  • Like I said just an idea. :)

  • Hi Becky119,

    Hope u r having a good day X

    I completely agree with the coast walker comments on

    vitamin B12 deficiency on top of CRPS, also vitamin D too.

    I had my blood tested for both of these and they came back extremely low !!!!!

    And this could be the cause of fatigue !!!!

    I don't go outside like I use to because of the noise,wind,people etc Because it causes pain !!!! And that's why I am Deficiency vitamin D !!!

    I live in the West Midlands X

    Gently hugs

    Christine CRPS

  • Thanks simba, I will look into that abd I agree with her too, it wouldn't help to find out. I hope your have in a good day too😊

    Stay strong😊

  • Welcome ! Don't be afraid to come and have a good natter when you feel down or have questions . I'm sure someone will be there to help . I admit I can't help much because my problems are different ,but you will always get some help . Good luck .

  • Hey Daveeb

    No problem, thank you very much for replying. I really need some one to talk to at the moment. Its really nice talking to lovely people like you. Thank you.

    Your Becky

  • I've just read down all your replies and thought how you were so worried about no one having any time for you ! it was like reading War and peace . I hope it put you a little bit at ease . You take care and keep smiling . x

  • Oh crap sorry. I didn't mean it to be like that. Thank you thow 😀

  • Hermes123. Hello Rebecca sorry to hear of your suffering at such a young age, If I were you I would ask your Mother if she could ask around to see if there is a local Doctor, who's speciality is skeletal problems as all doctors specialise in different problems, you would more than like get the help and advise from that kind of Doctor. I wish you all the very best and hope you can find some one soon who can help you. Don't give up trying there is some one who can help you the sooner the better. Best Wishes Hermes123.

  • Hi Hermes

    Thank you for your reply. I will defenly talk to her about thay. Thank you so much.😊

  • Hey there Rebecca. I feel for you. I have some different issue but I am too a desperate boy who lives with severe pain that literally took life from me, and I am more less young like you, only 22 years old. Be strong, and if you wanna chat, feel free to contact me via whatsapp or viber. My number is +385989870386. I would be glad to talk with you. :)

  • Hi banebane

    Thank you so much for your reply and I would really appreciate that.

    Thank you so much

    Becky

  • Hi Rebecca. You should be proud that you spelled dyslexic! Like the others who responded, i am so sorry that you are suffering so much. I joined this site ages ago and intermittently read messages (i rarely go online and have never responded before) but your post really touched me. Whether 16 or 60 (which i am) pain is pain and this is a wonderful forum where suffers can express both physical and emotional feelings without being judged. I have bulging discs, sciatica and fibromyalgia, (among other stuff). Am desperately trying to get on a disability pension (i work 2 days a week which is killing me). I also have a dowgers hump, which with all the other stuff, sort of gives me the appearance of an old witch - 'specially when i am shuffling along muttering to myself!!! No wart on the nose (yet!) - but I'm sure that will come. Ha ha. Try to keep smiling sweetheart - and embrace the gentle hugs we are all sending you. Luv Robyn (Rob)

  • HI robbie

    Thank you so much for your reply it was really touching and made me smile. I'm so sorry to hear your stuggaling so much, and if you ever need to talk I always happy to say Hi and chat.

    Your a star

    Becky

  • Hey Beccy. Ta for your lovely reply. I just popped in to say hi to you. A work day today so i am pretty shattered and just waiting for the old meds to kick in! I'm in Australia - where are you? I just read a message re a pen called paincare plus which you can use to target small areas of pain.. Might be worth a try. Take care and rest well, kiddo - and I'll be in touch again soon. Xx

  • Thank you so mucheck, it's wearth a go and om from Glostishire just on the out side of it.

  • Robbie regarding your dowagers hump have you been checked for scoliosis? Curvature of the spine. I had this at 16 and too long a story to go into it all but I just thought I would reply sorry you have enough going on like I have, but your bulging discs, sciatica and fibromyalgia can also relate to scoliosis symptons. Hugs to you.

    Rebecca what a sweetheart you are. Honey we are all allowed to say what we want when we are in pain, we can be happy, sad, even angry and for you to come here it will really help you as you can see, bless you angel, keep positive and write down all the suggestions people have given to you and go to your doctor as you are not being looked after properly so far by the medical profession and with your list it may make him or her wake up and do something to help.

    I will be praying for you, you are beautiful and write really well even though you have dyslexia, good on you. xxx

    Lorraine,.

  • Hello Lorriane

    Thank you so so much for your reply it has really touched my hart. Thank you so much and I will look into I when I have time.

    Your so kind.

    Yours Becky

  • Thanks Lorraine. Yes I do have scoliosis. I was in my early thirties when i once asked my doctor was there anything he could do. He told me that he'd had a sixteen year old patient with same complaint and that at my age i should (my interpretation) - just suck it up and stop moaning. Charming fellow! (He eventually got discharged from the medical profession for some other 'not nice' stuf.)

  • What a terrible thing to say to suck it up, my goodness so glad he has been struck off for it. I thought you may have scoliosis oh dear Robbie I don't know what to suggest. Depending on your age and what deteriation you have now on your discs how much pain you are in, but I would not have a fusion, I live in Tasmania for goodness sake what a co-incidence. There is a wonderful doctor in Queensland who could help you if you are interested let me know.

  • Just saw you are 60, and if you tell social security you have scoliosis and the rest of your illnesses you should get disability not a problem.

  • Just noticed your reply as i was logging off. I've been battling centrelink since late July. Actually just spent nearly an hour on-hold with them! Hopefully they will sort something out soon. Xx

  • You sound so lovely and caring, Lorraine (I especially like your reply to young Becky). I'm 60 (yikes - how time flys!). I don't think i would worry about an operation at this age. I also have arthritis in lower back as well as bulging discs and some sort of nerve damage that effects my left leg. Trying to battle that as well as my fibromyalgia (asthma, migraine, borderlune lupus, nephritis, vestibular neuronitis, diverticulous...). Better stop there - i am just showing off now!!! ☺Seriously though, i spend all my time managing my everchanging meds for the chronic back pain and fibro (while trying to work 2 days a week). Healthunlocked also helps, as sharing with like-minded people has been such a relief. And Tasmania - what a beautiful place to live. I am near South West Rocks in NSW. Lovely, but oh the humidity...!!! Awful. Xx

  • i am on very strong meds, and by golly I cannot believe you are having so much trouble with soc sec. If I can help in any way please let me know. It really does help talking to people who understand what you are feeling. So many just have no idea at all and think oh yes back pain! My muscles are also giving away so feeling a bit of a wreck. I am lucky though as if I had not had my operation at 15 I would not be here writing now, so I am fortunate and have to keep positive, I do not know how on earth you are working 2 days a week so very well done to you.

    Weather here is beautiful, lucky in lots of ways.

    All the very best

    Lorraine.

  • Can I just say you two people are amazing and of standing. Thank you so much for talking to me abd helping each other as well.

    Yours Becky

  • Doctors have very little understanding of how muscles function.

    CRPS can be caused by over contracted muscle. Note: the word can. This is one possibility among many possibilities. Lengthening out over contracted muscle can be a painful process but you are left with better functioning muscle and less pain and discomfort.

    Google: "muscle trains" this should give some information that is useful. See if your parents can contact the local football club and ask for the name of a sports therapist/masseur they can recommend. They should be able to help a little.

    Another person to see is an Alexander Teacher in order to help with posture and muscle control.

    This will cost money because it is not available on the NHS, It is part of the investigation we all need to do in order to determine what works and what does not.

    Hope this helps

  • Hi Johnsmith

    Thank you so much for your reply and I defenly will look into it. And even if it helps alittle i wouldn't mind that.

    Thank you so much

    Becky

  • Hi Rebecca,

    Look up Bruno Groening. When the medical profession can,t help you may find ease with Bruno. Look up the Circle of Friends perhaps there is one near you.

    All the best

    George

  • Hi wheelbarrow

    Thank you for yout dive I will deffenly look into it.

    Yours Becky

  • Hi - I'm always willing to listen. I can't cure you and I don't have answers about your pain. However, if you want to talk, I'll listen. Hope you are sleeping now, and getting the rest you need. Take care x

  • Thank you so much I would really like that 😊😊😊😊

  • hi Rebecca,sorry to hear about your health conditions,you'll find every one on this forum will only try to help with advice and support,it's such a shame that your suffering whilst you should be looking forward to adulthood,sometimes whilst your so young we have no idea what our health can throw at us,and I have had numerous health conditions since around your age,but I continued with each one,and with the help of the NHS I've managed each one as they came along,some not so serious but two that required life saving surgeries,I can't look in to a crystal ball and say everything will be easy but I'm still going strong and I'm in my fifty's,and sometimes as a parent we forget how hard it is as a teenager and also the way lifestyles have changed that words of comfort from parents is as important as it is to find a cure,I'm glad you've had so many responses and hopefully you will feel better knowing that folk on here really "care", oh and I didn't even manage to take my GCSES,I had glandular fever,and it didn't stop me from succeeding in life,you'll find nobody on here is here to criticise,and put it this way I'd be lost without predictive text so you'll find no one is perfect,so I wish you the best of luck 😊

  • Hey CB

    Thank you so much for your reply it was very touchIng and made me smile. Thank you do much.

    Yours Becky

  • Dearest Rebecca:

    First and foremost, I wish to begin by saying that my heart goes out to you; I was so touched by your post that I actually had tears running down my face by the time I finished reading (and for quite some time afterwards, as well😥). I live in the United States, and I too have CRPS; as you know all too well, it's extremely difficult to say anything good at all about this disorder, but I can say with great confidence that I don't think I would have handled this destructive and traumatic illness (and all the devastation it causes) with such grace and courage as yourself, especially at such a young age👏.

    I was just a few years older than you when I developed CRPS, but those years are crucial; unlike myself, you have had your high school years irrevocably affected (do they call it high school in the UK😋?)--years that most kids have nothing more serious than school and studies worry about (I don't mean to cast aspersions on high school students😳😊!--I know that school and studies bring a huge amount of pressure along with them, not to mention the stress and struggle often involved in the effort to grow, mature, and figure out who you are in this world and what's important to you; I only mean to say that you have had to shoulder a burden that often crushes many adults--one that can steal your energy, your social life, your self-esteem, and your well-being...all of which are crucial aspects of being a 16 year old, something that's particularly distressing, because you can never get your high school years back☹️).

    My CRPS began in my feet, and progressed from there to become a rare systemic version (central nervous system CRPS), which means that the small fiber nerves all over my body are subject to the relentless assault of and auto-immune process (I can't bear sheets at night either). If you wish me to, I'd be more than happy to share the details, but for now, I just want to focus on you😍...I can tell by your posts in this thread that you are an extremely compassionate, selfless, courageous, and generous soul (not many human beings on this planet would have taken the time to reply to every poster that responded to you, much less to do so with such kind and thoughtful words--and beyond that, you managed to do so even while suffering excruciating pain, which again, few human beings could manage, or to manage with such grace and bravery as you😊).

    Even in your original post, you spoke with such maturity and self-possession; given the pain you're in, no one would have faulted you for venting or complaining or otherwise spilling your agony into your words, and yet you expressed yourself with such equanimity, and even made the effort to extend compassion and well wishes to your fellow Health Unlocked friends (and we ARE your friends! Notice how many folks responded to your post--even though you initially worried that no one would--and who responded with concern, empathy, and warmth. Even if we haven't walked in your personal pair of moccasins, we've all walked in the same brand of moccasins, at least😋!, so I have no doubt that you'll receive a LOT of great advice and unconditional support here if you ever need it, even if we don't necessarily have solutions for everything❤️😍❤️).

    Oh my goodness, aren't I the Chatty Cathy😋!!; I didn't realize that my reply was so long😳. SO I guess I better wrap it up soon!--but if you have an email address that you'd be willing to share with me, I'd be delighted to send you as many details as I can as to what has/hasn't worked, to answer any questions you might have, and to be a compassionate and listening ear to you, if that's something you ever have need of😍.

    Suffice to say that I've experienced so much of what you described, from the physical pain to the shaming, invalidating, and unhelpful comments some medical professionals have made (and I am SO SORRY about that😥; I've felt that such comments have been more painful than even the CRPS itself, which is saying something, as you unfortunately know all too well☹️)

    I wish I could say that that's rare in the medical community (and specifically, within the CRPS community), but for the time being at least, if not necessarily typical (like any other field, there are good and bad practitioners everywhere), it's not all that unusual, either😥. Again, I'd be more than happy to share details with you, if only so you know you're not alone in this--not in the CRPS, not in the medical "adventures" (I can think of lots of better words for it, but I think the website monitor would censor them😉), not in your journey to recovery😍

    And you ARE on the road to recovery...CRPS can be devastating, chronic, etc., but even if you never necessarily "cured" of it (which you very well might be😄!--many people have "gone into a remission"/been "cured", so don't give up hope💗), it can most definitely be managed, and managed to the point that you can enjoy life again--a full, joyous, engaging, fulfilling, and exciting life, filled with all good things😄😋😍

    So try to hang in there, kiddo--you've got at least a two dozen people (the ones on this site, who replied to your post and are standing ready to give you all the support, advice, and comfort you need❤️), and if you managed to make so many new friends so quickly, imagine how much you are cared about, and how important you are to so many folks--friends, family, and strangers alike😊.

    I just wanted to point this out, because in your original post, you expressed a fear that no one would respond to your message, as though your questions and concerns (and therefore, YOU) were not important. But the fact that you got so many kind responses (and so quickly😋!) is testament to the truth: You and your story affected people very powerfully, so much so that they were moved to reach out to you and share their guidance, support, and compassion...which means that you are valued and cared for, and worthy of all good things

    Let me know if you want my email/phone number, and I'll be in touch. We're here for you ("we" meaning my seizure alert dog and I💗🐶💗)!

  • P.S. After all that Chatty Cathy-ing that I just did😋, I suddenly realized that I didn't give you any practical, concrete advice as to how you can manage your CRPS😳; if I was to dive completely into the subject it would undoubtedly be another super long post, so I'll save some of it for later, if we email😍

    I have some things you can do medically (i.e., tests to take, doctors to see, etc.), and others that you can do personally (things you can do yourself to manage your symptoms.

    Since you are in the UK, I don't have anything useful to offer as to CRPS specialists/hospitals/ treatments that are available to you...well, except for one😋. Before I get into that, though, I'm thinking I'll have to share a little background:

    After years of suffering and unsuccessful treatments, I got referred to a physician here in America that is a specialist in infectious auto-immune diseases, and specifically, those diseases that affect the nervous system. Virtually right away she had an understanding of what was happening with me, and ran tests for diseases I'd never heard of but that she suspected-- and wouldn't you know it, many of the tests came back positive, including some for a disease called APS (antiphospholipid syndrome, otherwise known as Hughes Syndrome, named for the doctor who discovered it).

    APS is an auto-immune disorder often called "sticky blood disease", because the affects the blood's ability to clot by producing antibodies against the cells; in essence, the blood is therefore "too thick", which blocks veins and arteries, and can deprive tissues and limbs of oxygen. Pulmonary embolisms, strokes, DVT's, and failed pregnancies are common as a result, and eventually, cause damage to virtually every system of the body, including small fiber nerves, which govern sensation and temperature regulation.

    As you know, CRPS is a syndrome that affects the small fiber nerves as well, so the result of APS is often CRPS. In other words, if you are diagnosed with CRPS, and then APS too, the former was very likely caused by the latter. This is really important because it means that there is a treatment for you that can have miraculous effects; it is unfortunate that very often, the degree of damage that you have when first diagnosed with APS might be permanent (meaning that the treatment is able to slow down or stop further damage, and to repair some damage that's already occurred, but it can't always completely turn back the clock and return you to normal😥).

    But few doctors know anything about APS, much less specialize in it; even fewer know about the link between CRPS and APS. But the treatment for APS starts with blood thinners (likely for the rest of your life, but they've done wonderful things with blood thinners these days, including some that don't have to get checked every week), and occasionally, depending upon the clinic/doctor, use IVIG (immunoblblin infusions) in the effort to heal past damage, lower antibodies, and strengthen the immune system.

    For me, that combination has been a lifesaver; just to start with, I used to have dozens of painful ulcerations (neurodermatitis) caused by the CRPS, and since m immune system was so damaged, they never healed. After a year on IVIG (usually given once a month), most of the ulcers has closed up, and I rarely get new ons anymore👏. And it's helped with the foot drop, neuralgia, headaches, tremor, double vision, etc. a bit, as well, so IVIG (combined with blood thinners) has been a miracle😇

    Diagnosis depends upon a series of simple blood tests, and occasionally a skin (or nerve and muscle, if necessary) biopsy, in order to evaluate for small fiber neuropathy), and of course, the doctor's clinical evaluation (some patients--called "serum negative APS"--are diagnosed with APS even though the blood tests for the antibodies were negative, because their medical history and current health status is so textbook for the disorder(keep that in mind in case you get the blood work and it comes back negative; you must still have APS).

    But ideally, the best thing to do is to find a doctor who is knowledgeable about this disorder from the outset, and who has compassion for the suffering that APS/CRPS have endured. And wouldn't you know it, THE doctor who discovered APS (and specializes in it to this day) is in the UK😋, you lucky girl you😀! His name is Dr. Graham Hughes, and he's at London Bridge Hospital in London; you can read all about him, APS, and contact him/schedule an appointment through that site (londonlupuscentre.co.uk).

    The CRPS aspect of APS is treated with a combination of interventions: Anti-seizure medications (gabapentin/Neurontin and Lyrica are popular choices in America), pain relievers (usually opiates; I'v ben on methadone almost since I first became ill; it's a lesser known pain medicine, but it happens to work really well with my body and brain chemistry, so much so that I've never had to switch meds or up the dose, which commonly occurs with opiate treatment.

    Viscous lidocaine has been great for skin or mouth sores (it's often prescribed by dentists), and a topical cream (called Emla in the States, a mix of the numbing agents lidocaine and prilocaine) gives great relief for the skin's surface (I apply it all over the affected area before i put clothes on, try to pull a sheet over me at night, etc.); it doesn't penetrate to deep levels, so you'll still feel the deeper pain (the ache that feels like your bones are on fire)--that will be the opiates' job. Epsom salts baths (or hand/foot soak, with the affected limb submerged as much as possible; a deep bucket or pan is good for this purpose. I often do this when I'm watching TV, firstly because it's soothing and relaxing, and provides good pain relief; but also because we tend to notice pain more acutely when we're not occupied, and this is a great way to distract yourself from that awareness😍

    But if you combine the Emla cream with, say, Neurontin and MSContin (morphine pill), you should be able to manage your pain really well (I only say that because it has been my personal experience, and I wanted to share options with you; but I'm not a doctor, so I can't know what combination might work for you, or otherwise prescribe/recommend any one treatment regimen...I just wanted you to know that there ARE options, including options that work pretty well😀).

    I could tell you in ore detail about all the effects of APS and how different symptoms are treated, but this post is already long enough (you poor thing, you'll be reading until Christmas as it is😉). If you have any further questions or just want to chat (or text? I have no experience with oversea calls; does it cost a lot to do so😀? In which case, we could communicate through email or text😊). In the meantime, my thoughts and prayers are with you🙏😇

    P.S. I just remembered... Health Unlocked actually has a "Sticky Blood" section just like this one for APS questions/concerns😊. If you go to the site's homepage you can become a member for free, and talk to a lot of patients who live in the UK and have met Dr. Hughes; there are also many, many kind people on that thread who devote themselves to getting help for anyone who posts there (even if you haven't been diagnosed with APS), and they have lots of great advice and helpful tips😍

  • P.P.S. I hope your GCSE's went well yesterday; I've got my fingers crossed for you😍👌!

  • Hello squeak mouse

    I'm sorry this reply is so late, iv been trying to get throw my ecams abf my I say huge thank you to you!!!! Your messages where so touching and loving and have brut tears to my eeys quitliterly right now, and im.morw then happy for us to swop emails, if you are too. Thank you so so much!!!! Your a star and I'm sorry to here about the CRPS and if you need anything then please shout.

    Thank you

    Yours Becky 🐼

  • If any of you want to help spread Awareness of CRPS Please join the CRPS Global Awareness Campaign facebook.com/groups/1792800...

  • Hi Kevscar

    Thank you for the advice I will look it up.😊

    Yours Becky

  • Dearest Becky😍! (Mind if I call you "dearest"? I know we've never met, but after reading your sweet, open-hearted, and thoughtful posts I feel like I've known you forever😉, and most of all, you really do seem like a "dear" in every sense of the word...it suits you❤️)

    First of all, thank you thank you THANK YOU for your kind reply to my posts; I'm SO HAPPY that they were helpful to you (it's the least I could do😍! You've been through so much already, I wish I could do more for you😥; ever since I first read your posts, I've been wishing with all my heart that you'd receive a little respite and relief, from some source or another...and ideally, LOTS of respite and LOTS of relief, from LOTS of sources☺️).

    Secondly, I hope those GCSE's weren't TOO terribly taxing for you, and that you've been able to recuperate a little after the stress and strain of preparing for them and sitting for them. I'm sure you passed with flying colors😄😉!; I don't know what subjects/skills the GCSE's test for--we don't have them here in America--but it's clear that you're an incredibly intelligent, intuitive, and insightful young lady (each and every one of your posts was noteworthy for it's eloquence, clarity, poignancy, and perceptiveness--at levels that bested those I've seen written by folks five times your age😉).

    And thirdly, you are welcome to email me anytime at (Petspeaker@gmail.com), and I will write you back from there, and then I can give you my phone number too if you need/want it, so you can text or call anytime😄

    I'm REALLY looking forward to chatting with you!😍 In the meantime, my prayers and thoughts are with you, always❤️

  • Hey squeak mouse

    Firstly I don't mind being call dearest it achally is very nice xx and thank you so much for your email I will try to contacted you as soon as I can. Thank you so much and iv manged to get 2 Exams over with just one more to go. Still nervouse thow.

    Chat to you soon

    Yours Becky

  • Dearest Becky😍! Thank you so much for writing! Hang in there kiddo, you can get through this❤️!! With flying colors😋!!

    P.S. If you get a chance, could you send me your email address(?), I've been trying to send you something for the last couple hours, and for some reason I can't get it to post ☹️(?) My own email address is (Petspeaker@gmail.com)😍

    Thank you thank you😁!!!

  • SqueakMouse again😍

    The thing I'm trying to send has to do with your exams. Just thought you might be wondering❤️

  • Hey again squeak mouse

    Thank you so much and of course you can have my email its:

    RemWolf.anime@gmail.com

    I hope this gets to you okay, sorry it's quite late.

    Yours

    Becky

  • Hi Becky, I'm just going to say hello for the moment :-) My name is Wendy and I was diagnosed with CRPS just over a year ago. My life has changed more than I could have imagined, but it's still a good life. I am very lucky, though - I have had kind and excellent treatment from the specialists all the way. They wanted me to go to the centre in Bath, but I said no to that, as I didn't want to leave my family for that length of time. I was just wondering - here in Scotland, we have Independent Advocacy. It costs nothing and you are assigned your own advocate, who helps you with getting your point across when you need to make how you are feeling clear to any professional, consultant etc. Here's a link to tell you a bit more about what Independent Advocacy is -

    siaa.org.uk/us/independent-...

    I don't know where you are in Britain, but I would hope that there is a similar service in England.

    Anyway, nice to meet you, Becky and I will help you any way I can on this forum - just ask :-)

    All the best, Wendy

  • Hi Wendy tha k ypu so much for your reply it really means alot to me. I will defenly have a look at the link, in sorry this reply is so late, iv just been a bit all over the place resently.

    Thank you, your a star!😊

    From Becky

  • You're more than welcome :-)

  • Hi Becky,

    I have never been on any of these forums before, but I read you posts after trying to find alternative pain management and I just related to it so much,. I too have CRPS amongst other pain difficulties, which started when I was child, (have had pain for 20 years) and I too have been to countless medical appointments, pain killers, physio, nerve stimulation etc... only to be told time and time again sorry don't think there is anything else we can do for you, we will discharge you. Years of my life felt very low and felt very alone. Like many here pain has a major impact on my life daily and effects my mobility greatly. Despite my pain, I am in a much more positive place and want to try and find a pain management course or other alternative to try and manage my pain and improve my mobility. Thank you for your post - it made me realise there are so many others like yourself that also understand living with pain.

    I wish you all the very best and hope you find something that helps your pain, thank you

  • Hey EmJu

    Thank you so much for your reply I'm sorry this so late getting to you it's been really tuff at the moment due to flares ups and my phone been playing up. And I really do simpathys with what you mean, it is very hard and most of the time it's hard to get people that will lose and help you. I'm sorry to hear you have had CRPS for so long, my heart and prays go put to you ( just like every one on this site, and I really do mean it, my hear gose out to every one here). And to be honest I don't deserve a thank you, I think you do because you have had this longer then me and I think you amazingly brave and careingly.

    So a very big thank you to you.

    Yours Becky

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