I have recently been diagnosed with Reflex Sympathetic Disorder. Am I imagining the pain in my uninjured foot?

I injured my right foot in a slip and fall on Sept. 20, 2013. It's painful to walk, I have some degree (4-8) of pain constantly and my foot feels real cold all of the time. I have started feeling similar symptoms in my left foot. Is it my imagination or can RSD spread that quickly? I force myself to walk but do find that I prefer laying or sitting because both feet hurt when I walk. Finding a comfortable shoe has also been a real challenge.

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  • RSD is the old name for crps so you may find better information on the disease by searching under it's current name.

    CRPS has a mind of it's own mine spread from my left foot to encompass the whole left hand side of my body over the period of about 2 years. It is good to try different materials against your skin, set up a pain management routine and keep up with any physio.

    You should be referred to a specialist who can put in place measures to try and switch the disease off. Good luck

    nutty

  • Thanks. Sorry to hear about your struggle. I understand my next step is to see a neurologist. Following that is pain management therapy. I'm not ready to accept the fact that I will not be able to control this disease.

  • This disorder cannot be "switched off" 13 years on and I'm still struggling from day to day

  • Same here unable to work and recently diagnosed with Fybromyalgia on top of CRPS. Been on incapacity benefit for a while then ESA but once I have had official diagnosis of both illnesses they have assessed me as fit for work can you believe it . Appealed and now gotta appeal the appeal trying to get a specialist involved to help me. 13 years is the length of time I have been suffering with mine and only diagnosed with the CRPS about 9 months ago officially. ATOS and the like don't even know what half of these illness are CRPS is more painful than a patient with an amputation apparently and 13 years down the line there isn't a cure that is fact. Must be treated within 6 months of the trauma.

  • It's possible that because you've injured one foot, you're not walking right and therefore not using the uninjured one correctly. This could be why it's hurting.

    Don't panic about the pain management therapy. I was reluctant when pain clinics were first mentioned because I had some preconceptions about what they would do, which turned out to be wrong! It did take me a very long time to accept the chronic pain so I understand where you're coming from. It's difficult to take on "accepting" something when you don't feel ready, or if you don't feel it's the right thing for you.

    But you can get some sort of control over the pain. Alright, it might not be possible to be in total control of it, but pain management can help you to see, and to try out, lots of different strategies so that it controls you less. Then when it does flare up you feel less wobbly and start to realise that you can cope. Being referred to pain management is not the end of the road.

  • I am very interested to see they are sending you to see a neurologist they usually send you to rheumatoligist I will watch this space with interest. Makes sense just a different route.

    nutty

  • I'm also an outpatient with Neurology as crps is an incurable brain disease therefor conventional pain treatment is no good at all,opiates are the usual route,I'm on Fentanyl patches which are good at taking away pain when I'm idle however I have not walked without crutches in over two years,crps has had the ability to make me feel very depressed and sad,try not let it get you down,I havnt but if you have good family and friends I'm sure you will be just fine,all the best to you.

  • Hi I have CRPS too, its not the end of the world but it is life changing. Please accept all the help you can and take up any referrals you are offered, the hardest part is often getting any type of help. Speak to your neurologist about having thermal imaging as this is often a good way for the condition to be diagnosed. Don't be afraid to speak up about your other foot as any health professional who knows about the condition will understand how it can spread.

    Good luck if you need inspiration I can give you the web page of a young lady who has just cycled from Lands End to John O'Groats with CRPS in one leg - she's amazing and shows what can be done.

  • If your injury was 2 months ago, this is really early days. I have been to an excellent pain management clinic, wonderful group of people attending as well as Psychologist and Physio. This is for my cervical spondylosis and nueropathic pain which I have had for years.

    However, I have learned that any injury takes time. I injured my lower leg in a fall 18/12 ago and despite excellent NHS physio it still hurts enough to wake me at night. I then went to see a podiatrist (private) as i was walking so badly. This has been a miracle! She has taught me very specific exercises to improve my gait and I have specially made inserts for my shoes. Compensation for an injury does make other parts of your body hurt. I use massage and different fabrics to rub the area to improve the proprioception. The improvement has been amazing; I have reduced the pain relief dramatically and can now walk to the shops without people asking me if I'm ok!

    Hope things get better soon,

    regards Sheila

  • Hello croc,I was going to ask you if you have tried hydrotherapy,I think this May be extremely good for you,if you have not tried it please give it ago,you will not at all regret it,good luck Steven.

  • Thanks Steve, I'll look for this and try it out. Regards Sheila

  • I'm responding to everybody who has posted replies on C.R.P.S. This disease is an absolute beast and it's damn evil,I wish we could all get together and chat to each other about how we feel as it is us who know how we feel,although highly qualified doctors are very good they do not suffer from what we do,I have tried so hard to find a patient with C.R.P.S in the Halifax area but I get told because of data protection rules which I respect I'm not allowed to be told how to contact folk who may suffer from C.R.P.S,I simply want to talk and laugh with other sufferers as it's me and you who know! Sorry for blubbering but have any of you heard about how the American docs are trying to overcome C.R.P.S? Apparently they are using mirrors to try and trick the brain,I believe the results are startling.all the best Steven, Halifax.

  • I would love to arrange a get together with other sufferers. It would be amazing to actually speak to people who understand what I feel and the level of the constant pain we deal with. I have had the mirror treatment and it did not help, hydrotherapy was the most succesfull at easing the pain and keeping muscle tone. I hve actually met three patients who have had their crps switched off but all within the first two years, I am 3 years in now and going crazy.

    How can we arrange a get together any ideas? even maybe a skype confrence maybe?

    nutty

  • Hi Steven, there are some places you can go to meet other people it is the best thing ever and you feel normal. The Royal Mineral Hospital at Bath has a unit for CRPS and takes referrals from all over the country, they usually arrange a patient conference every year or so although its in Bath and and I have to travel its been so worth it just to get together. There have been speakers like Dr Andreas Gobel who works in Liverpool on a dedicated research project into CRPS and Prof Candy McCabe. Try looking at the bath web site and if you want I can forward you emails although the lady who ran it has just given up due to a family crisis we will still get the notes from the last get together soon. Many people travel many miles but to feel part of a group and share research is great. There are a number of brilliant research projects at the moment looking for volunteers. Elsie

  • Elsief that sounds fabulous,I will almost certainly give that ago,thankyou ever so much love,all the best Elsie, Steven.

  • Thankyou so much Elsie.

  • Hi Steven

    My email address is majclean@aol.com the young lady who did the cycle ride is Amanda Nelson she raised about £2000 but better than that she raised awareness of this awful condition to many people. Can you also go onto the NHS web site and look up CRPS and go to the research page as there is a fantastic trial going on at the moment at various sites around the uk, which has has had some remarkable results you should put yourself down for it, I can't as I've had the condition too long to meet the criteria.

    I have quite a lot to do with the people at Bath and will link you in to all this if possible.

    Love

    Elsie

  • What do I do Elsie?.

  • Nutty what do you mean when you say two patients have had there C.R.P.S switched off? I don't understand pal.

  • They have recovered completely with no further symptoms of the disease. One woke up one morning and the symptoms had gone and never returned the others a more gradual reduction. Gives us all hope hey?

  • Hi, not sure about a foot injury being called a desease. Injured mine January in hospital..Doctors said no broken bone so didnt get any treatment. Was extra painful and was housebound for months. Managed to get suitable pain medication to help put up with condition. At last its being looked into. Obviously there are nerves, ligaments, tendons muscles in that area so somewhere something has been damaged or trapped and needs to be released.My other foot has now started to react to the extra pressure so will try and sort that out. The injured foot has restricted upward movement. Foot injuries are it seems,difficult to sort out. Rekon if footballers get foot injuries sorted, so can we. Sure is a very painful injury. Luckily I am managing medication via my gp. Lets hope we all improve in time with correct treatment and advice. ,

  • Hello RSDParagould, No wa y is it your imagination. I have had months of no care given apart from pain medication. Now some notice is being taken. Its no joke about the pain and the cold feeling. My other foot is now being troubled with part of the nerve strain but I seem to have ligament or perhaps tendon and muscle damage to injured foot Recently was provided with insert shoe support which has slightly eased some nerve problems. How are you managing, have you had any advice or further improvement.

  • Hi again, Am in much less nerve pain with the insert on worst foot, not feeling as cold but still need pain capsules at night due to tingling. The left foot eases first then later right. So after all these months getting somewhere.

  • What you feel is what you feel. No person can tell you what you feel.

    If you feel pain, let your Dr know about it. No need to suffer.

  • I 'injured' my foot just running at the gym. (I have had previous surgery on this foot). Nothing could be seen on xray, MRI or ultra sound. One Dr just dismissed me saying it was CRPS,giving me Gabapentin to help (which it didn't) but I wasn't convinced, nor were the physios. My Cosultant (from previous surgery ) did not accept that and discovered I have degeneration of the bones inmy foot, but it is hard to see, but I had a steroid in jection in my foot, which hleps fr 3 days and now I am awaiting surgery to fuse bones. I believe I am developing CRPS due to new symptoms, but hope this will be relieved by the surgery. Hoep something works out for you.

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