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new to CRPS, am i crazy?

Posted , 4 users are following.

filly1
filly1

hi guys, im female 36, since 3 years ago i started to have pain in my fingers (both hands) then my ankles then my left knee, now i have burning toes (can't even wear socks when it happens) my shoulder joints are so painfull and wakes me up most night about 3-4am. My GP never wanted to do anything until i started to take pictures of my fingers, i have episodes of swelling fingers, red knuckles, painless bruising on my legs, i have an upset tummy most days. Since then they referred me in emergency to a rhuma, they took xray and found out some degeneration changes in my feet but nothing else. Some days i can barely stay standing up because of my back. The rhuma has diagnosed me with CPRS but hasn't much explained what exactly the condition is, so obviously i went on google and since then i feel that i am going crazy. I have been told by my GP numerous times that it is all in my head and nothing is wrong with me, but when i went the first time to my rhuma they saw that my shoulder joint were really bad, my knee had a lot of crepitation.  If it is all in my head why do i have so much pain and no grip at all anymore and why those pain are affecting my daily routine so much.

Can anybody explain a little more about this and do can we get rid of the condition (i have been told that they need to reboot my brain)

Thank you so much

2 likes, 9 replies

9 Replies

  • ali-p
    ali-p filly1

    Posted

    Hi. Your Not crazy..... I've been living with crps type 2 for 20 years now. In basic English.  Our brains are telling our body/limbs there's pain.

     It's not fully  unstood yet to why.

    Try this web site American RSDHope. there's  information on there.click on the puzzle numbers and there's more information. 

    This was my first Web site I looked at.

    Your not alone.... I'll try and help as much as I can.

    I can tell you please DO NOT USE ICE. It make rsd/crps worse

    Gentle hugs

    • filly1
      filly1 ali-p

      Posted

      Hi ali, Thanks for your reply. i did looked at various website and they basically all say the same. I am still not 100% sure the rhuma is right about the condition. I have the burning, the attrocious pain but only 1 finger is can't touch things with, recently i started to have my toes numbs. I was actually wondering if my teeth ache would be due to that as when i went to a specialist they did check the nerves of my teeth and they were amazed at how some didn't have any feeling at all but other were extremely sensitive. it seems that most people on some support group on FB are suffering a lot which i don't feel that my pain is making me that bad. I do still do a lot, sometimes it is really hard for me to do them but i have no choice. I know that it is not arthritis and all my blood test are fine but it seems that i am so good compare to others so i am wondering if the rhuma was wrong about the diagnose
  • Goanna
    Goanna filly1

    Posted

    Hi Filly, I'm guessing you've had lots of blood tests to rule out things like rheumatoid arthritis, autoimmune diseases like lupus , scleroderma etc. Also a full vitamin blood screen. Defficiency in some vitamins can cause severe symptoms. You also  mention an upset tummy most days,  Chrons disease and ulcerative colitis can  affect joints  as well. As a rule most Drs   only check the standard vitamins but all should be checked. 

    You are right about rebooting the brain, that's the way the latest research is heading, away from a reliance on pain meds, although they are certainly needed by many people.  There is so much information online , that Drs don't even tell you. Only read reputable sites and  google latest treatment for CRPS, there are lots  of things to try. Wether they help you is another thing. My Own exoerience of 3 years after a sprained  ankle is, that not a lot can be done at the moment for me.   I react too strongly to meds so I try lots of other things. The key to any sort of progress is to be personally proactive and ask lots of questions of your Drs. If they can't help, or aren't interested move on quickly , don't waste time with them.  Having a good medical team around you ishelpful, and pain clinic can also be a support . good luck it can be a frustrating journey at times.! 

    • filly1
      filly1 Goanna

      Posted

      Thanks Goanna, yes they did blood test for RA for the last 3 years, they did do a full blood test for things like lupus as you mentioned and other kind of disease, i know they also checked my immune system and my tissues stuff, they all came back as normal apart from my xray (feet) which show a very advanced osteorathritis. I will be honest i don't really know what is going to happen now as my Rhuma told me that she is going to ring my GP to tell them to put me on a sort of tramadol or kind of meds like that but with those drugs i can't drive. My Gp's are useless, they always talk to me like i am hypercondriac (which i have been told by one one them), so i am honestly scared to go and ask for stuff
  • Goanna
    Goanna filly1

    Posted

    I fully understand your frustration, I had one GP tell me to take up yoga and relax??????  I eventually found a great female GP who whilst is not able  to do much, is very supportive and makes home visits. Tramadol is very strong, and as you say you can't drive when on it. Have you tried a pain clinic at a good hospital. They have multidisciplinary. teams including pain specialists, psychologists, physios, occupational therapists, to name  a few. They cover all aspects of managing CRPS.  
  • slebby33
    slebby33 filly1

    Posted

    DEAR FILLY1.I TOTALLY UNDERSTAND HOW YOU ARE FEELING.HUNNIE.THE BEST SUPPOERT I HAVE FOUND IS WITH A FB SUPPORT GROUP CALLED CRPS/RSD FIGHTERS..THEY ARE SO LOVING AND SUPPORTIVE,AND WILL ANSWER ANY QUESTIONS YOU MAY HAVE REGARDING CRPS.I AMAFRAID SO LITTLE IS KNOWN BY GPS AND EVEN CONSULTANTS ABOUT THIS DISEASE,ITS QUITE SHOCKING,AS IT AFFECTS 1 IN EVERY 3,800 PEOPLE,2/3 WOMEN.DID YOU HAVE ANY FORM OF SOFT TISSUE INJURY OR NERVE INJURY BEFORE ALL THESE SYMPTOMS CAME ON,AS THIS CAUSES CRPS.IF YOU GET AN INJURY AND DON'T SUFFER FROM THIS NEUOPATHIC DISEASE,500MG OF VITAMIN C CAN PREVENT THIS DISEASE,BUT I AM SORRY TO SAY THERE IS NO CURE.I AM BEDRIDDEN WITH CRPS SINCE LAST APRIL 7TH! PLEASE DO NOT PUSH YOUR BODY TOO FAR LIKE I DID!!! PACE YOURSELF,DO NOT GET STRESSED AS IT CAUSES FLARE UPS AND SPREADS,BUT STAY AS ACTIVE AS POSSIBLE,EVEN IF IT'S HOBBLING TO THE KITCHEN ETC EVERY HOUR OR SO!! TRY TO AVOID NICOTINE,CAFFINE,AND PROCESSED FOODS! YOU ARE A VERY SPECIAL PERSON TO BE COPING WITH THE MOST PAINFUL DISEASE KNOWN TO MANKIND,SCORING A POSSIBLE 42 OUT OF 50 ON THE MC GILL PAIN SCALE.MY HEART GOES OUT TO YOU HUN,LOVE SLEBBY33
    • filly1
      filly1 slebby33

      Posted

      hi slebby33, thanks for your reply. as far as i remember i didn't have any injury my rhuma told me that it started after a very bad pneumonia i had about 8 months prior the start to the first pain. My pain started with my wrist and fingers then lost grip, then my fingers started to swole up and had red knuckles on both hand and like burning sensation now the same pain is in most of my joints but i have burning right foot now (sometimes my right hip is burning too), my shoulders are the worse to the pain, they are waking me up every morning, i have stiff fingers every morning and a lots of numbness in my feet (but stays for a few hours and then goes away). But one thing i have found is that while i am working i am painfree ish but as soon as i stop the pain is coming back with a vengence. i just don't understand why me and still try to see if the rhuma could be wrong, i know all my blood test are fine, vitamins are fine, immune system are fine. i have been told by GP that it's nothing wrong with me so i am still unsure.
    • slebby33
      slebby33 filly1

      Posted

      DO NOT BELIEVE WHAT ALL DR,S SAY ABOUT CRPS,AS MOST HAVE VERY LITTLE KNOWLEGE  REGARDING CRPS! MY PAIN CONSULTANT KNOWS NOTHING ABOUT IT,I TAUGHT HER ABOUT IT!! NOW SHE IS DOING HER HOMEWORK! I REALLY DO RECOMMEND YOU JOIN CRPS/RSD FIGHTERS.YOU WILL GET THE WARMEST OF WELCOMES AND 320 PEOPLE WORLD WIDE WILL ANSWER ALL YOUR QUESTIONS.EVEN WIKI SAYS MOST PEOPLE WITH CRPS,TURN MAINLY TO SUPPORT GROUPS FOR HELP AND ADVISE..THEY ARE AMAZING SUPPORT TO ME.I BEG YOU TO JOIN HUNNIE.ALL YOUR ANSWERS ARE THERE! MY FINGERS ARE AGONY TO BEND,MY SHOULDERS ON "FIRE" PLUS FEET,AND I GET NUMBNESS TOO! DO YOU ALSO GET PROFUSE SWEATING??? TAKE CARE MY LOVELY,LOVE SLEBBY33
    • filly1
      filly1 slebby33

      Posted

      well sometimes i sweat like a pig but i just thought it was me. lol  could you send me the link for the CRPS/RSD FIGHTERS please

       

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