CRPS??

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Hi everyone,

I suffered a severe sprain to my ankle nearly two years ago. Despite several visits to my GP because of ongoing pain and instability he just kept telling it would heal in time.

I fell over on it at least another 6 times due to instability. Each time I had to take time off work and rest it. My ankle was swollen, red and had a burning sensation.

Eventually my GP referred me for physio. Unfortunately the physio made my pain much worse. I was then referred to an ortho expert who said that I had possible detachment of two of my three main ligaments. I was referred to try physio again. Again it made it worse.

My main symptoms are: Aching 90% of the day, burning 60% of the day (really bad at night), patchy colouring, swelling, twitching, stiffness. These have lead me to have insomnia and depression for which I have just started taking medication.

I feel so lost and out of control of my health. I can't deal with the ongoing pain and I can't begin to tell you how it's ruined my life. I stopped leaving the house other than to go work, put a lot of weight on, stopped striving for a career I worked so hard for.

My treatment on the NHS has got me no where and I don't really know what to do.

Sorry to waffle on so much! Is there anyone out there that has been diagnosed with CRPS that can recognise if my symptoms are similar and what you went through before diagnosis?

Thank you in advance x

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  • Posted

    My husband has CRPS, which started in his hand as a result of surgery. Your symptoms of constant pain, swelling, burning, patchy coloring, stiffness are all symptoms of the condition.  PT is actually the best recourse for it, but you really need to get someone to check you out for CRPS as soon as you can.  You might try a pain management doc or a neurologist.  It is a very tricky condition, and it can definitely change your quality of life, but try not to let it get the better of you mentally.  My husband has been out of work with it for almost a year as it has spread to other areas.  But I believe his good attitude and faith have helped him deal with it.  Good luck!
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    • Posted

      Thank you for taking the time to reply to me. I'm worn down to the very bottom but trying to keep my chin up.

      I have tried to push for a diagnosis from my GP (not CRPS specifically just something!) but I feel there's a lack of empathy and/or willingness to make a decision.

      Maybe once my antidepressants start to work I will have more strength to ask again.

      I hope your husband overcomes his illness gets back some normality.

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  • Posted

    i cant help with the crps side of things but I have posted below some info regarding what u said above which states surgery is an option if physio does not help.

    Re crps I'm no expert but I do have a pain syndrome of some kind and have spoken with Drs re the same issue of the nerves basically sending incorrect messages when your way out of the "danger zone of injury" so if that is what's happening I can only suggest a few things I've read have helped others whilst I've been looking for help.

    TMS recovery programme - free audios and advice just google it

    Dr sarno's book available on Amazon for cheap which many swear by.

    Anticonvulsant meds like pregablin/gabapentin

    Amytriptlyn/nortriptlyn

    someone on the neck pain forum mentioned low level laser therapy and said his persistent chronic neck pain was healed after having theses treatments, on his testimonial I've booked myself to a local place who does this. Yet to find out if it works but in theory it helps pain and reduces inflammation.

    You could try the actipatch who were doing a trial for 2.99 online or 19.99 in boots. Not the same as tens as you don't feel it.

    Tens machine

    Finally your entitled to a second opinion if you want one and you can ask for a scan if they haven't done one. Might have to fight a little to get it.

    Lastly here is the info I found:

    Will I keep having trouble with my ankle?

    The majority of ankle injuries get better completely and cause no long-term problems. Unfortunately occasionally there is permanent damage to the ankle. The ligaments may fail to heal properly and become weak - leading to ankle instability, or there may be damage to the joint itself or some other structure nearby - leading to ankle pain and swelling.

    How would ankle instability be diagnosed?

    Your doctor or physiotherapist will listen to your complaints about your ankle and examine you. They will look for any sign that you have some other problem around your ankle, such as damage to the joint surface. They will stretch your ankle to see if the ligaments are abnormally weak.

    An X-ray will usually be taken to see if there is any damage to the bones of your ankle. Ligaments do not show on X-rays. Ligament damage can be shown by taking X-rays with your ankle stretched in various directions ("stress views") or with a magnetic (MRI) scan. However, these special tests are usually not needed at first.

    What can be done about ankle instability?

    Most people with ankle ligament instability have damage to the ligaments, which can be overcome with appropriate physiotherapy rehabilitation. The rehabilitation concentrates on two main areas. Firstly strengthening the muscles around the outside of the ankle. Secondly, by improving your balance. This may require the use of specialised equipment such as a "wobble-board," or a "trampette." However, similar exercises can be practised at home by using a cushion, or a piece of sponge. Your physiotherapist will help you with this.

    If your ankle or Achilles tendon are stiff, you will also be shown exercises to stretch these. If your foot shape makes you prone to extra stress on the ankle ligaments, a moulded insole may be advised for your shoe to reduce these stresses.

    Most people will find their ankle much more stable and comfortable after physiotherapy. However, in some people problems continue. At this point the opinion of an orthopaedic foot and ankle surgeon may be helpful, and your general practitioner may refer you for further treatment. The surgeon may also suggest an exploratory operation on your ankle (arthroscopy) to check on the state of the joint. If these tests suggest weakness of the ankle ligaments, an operation may be advised.

    Will I need an operation?

    Most people with ankle instability will not need an operation. Even if your ankle still feels unstable after physiotherapy, you could try a brace rather than having an operation to tighten up or replace the ligaments.

    However, if no other treatment makes your ankle comfortable and tests show that the ligaments are weak, an operation may help. There are two main types of operation:

    the damaged ligaments are tightened up and re-attached to the bone.

    " One of the nearby tendons is used to replace the damaged ligaments.

    Following surgery you will be in plaster for six weeks. After this you need to wear an ankle brace for a further 6 weeks. Physiotherapy treatment is usually required. After 3 months you will work with your physiotherapist to regain the strength, and mobility of your ankle. You can start light exercise at 3 months, but sport involving twisting (such as football, rugby, running on rough ground and squash) are not allowed until 6 months after the surgery.

    The complications which may occur after a ligament reconstruction operation include:

    • pain in the ankle, either because of damage at the time of the original injury or because the ankle is now tighter than before

    • numbness or tingling down the side of the foot due to stretching of one of the nerves either at the time of the original injury or the operation

    • persistent swelling of the ankle

    • Stiffness of the ankle, restricting the range of movement

    • In 5 to 10% of people the surgery does not work, and the ankle remains unstable

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    • Posted

      Thank you Charlotte for taking the time to give so much information!

      The ortho I saw said that she advised against surgery because of the passage of time and that it may make my chronic pain worse.

      I've seen a podiatrist who said that I most likely have damaged the nerves in my ankle/foot which is causing the burning sensation.

      I feel so frustrated having been to my GP so many times and being passed to and from pillar to post. I've had several X-rays which confirmed no bony injury.

      My depression has sent me into a never ending vicious circle. Pain = depression and then depression makes my pain worse!

      I have a medication check up in two weeks I will see if I'm brave enough to ask for a second opinion!

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    • Posted

      Bless you, sorry to hear about your pain. I personally know exactly how frustrating Drs are and how in my opinion inept they are at dealing with anything chronic.

      Pregablin is very good for a lot of people however for me it gave me heart palpitations and restless legs, I tried gabapentin but i had an adverse reaction. There is an antidepressant called cymbalta which is supposed to be very good for its pain reducing effects as well as depression, if you have a look on drugs dot com you will see reviews, another anti d that is also both an anti d and has pain relief properties it Wellbutrin, perhaps ur Dr could at least switch you to one that helps with both problems. Finally I suggest you ask to try the lidocaine 5% patch, now these don't seem like they are offered freely and according to my gp can only be prescribed by a pain clinic or neuro etc so you will have to ask to be referred to pain clinic they have great reviews but I haven't got my hands on them yet as my PAin clinic not till sept.

      If you google vitamin c and crps you will find studies and info on high dose vit c which supposedly stops the potential spread, I don't know much so only read from trusted sources and discuss with Dr to check safety but it's worth a try. Also u could be asked to be referred for cognitive behavioural therapy which supposedly helps chronic pain by retraining mind, same as tms programme and Dr sarno's book from Amazon.

      Good luck and don't forget Drs are just human, they pee and poop like the rest of us, even though they make us feel like kids that have been hauled into the headmasters office. I've always been quite timid with drs and it's never got me anywhere, if u can see a female Dr they are usually more understanding and try and take someone with you as back up . Drs think they are gods but they seem to know very little about anything once u start really asking them questions

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    • Posted

      Hi Charlotte

       I take gabapentin, cymbalta, and welbutrin.  I also take tramadol and some hydrocodone for "break through" pain.  It seems the cymbalta gabapentin combo is very popular with pain Dr's right now.  I think they are worth taking and can improve mood and reduce pain.  I really liked that you mentioned the Dr's power.  I started having surgeries when i was 12 (15 surgeries since) so I've had a very timid feeling with Dr's most of my life.  I do not do good with advocating for myself and have found having someone with me to support me really helps me to be strong when dealing with Dr's.  I hate that feeling that i am completly at their mercy and the fact they might be having a bad day could potentialy ruin my quality of life.  I have to tell myself all the time to be strong and stand up for myself.  Mood can play a huge role in pain.  You hurt or you loose some ability and freedom and you get depressed and depresion makes pain worse which makes depression worse and so on.  It can be a vicious cycle.  I have been at the point where i seriously conciderd ending it all because it just got to be too much.  I hope we can all be strong and get the treatment and respect we deserve.  Thank you charlotte for being here.

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    • Posted

      Hi rjatworks,

      Sorry to hear you have had so many operations and in so much pain, we are really brought up to believe Drs have all the answers and they are superior, truth is they don't and aren't, that was the scariest thing for me when it became apparent the Drs actually can't fix a lot of things and aren't as knowledgable as they make out. I know exactly how u feel regarding your quality of life whether they are having a good or bad day and we always feel we have to be nice and not make a fuss or they may decide not to help us however I can tell you from personal experience that being nice for 6 yrs has got me no where fast, the only referrals I've had are ones I've asked for and when I've been firm with Drs and done my own research. My mum took years of being told by Drs she was depressed as she was really ill, when we moved area she got a new Dr and they just looked at the old records and said the same, well she had a break down, went ballistic and made such a scene the partner of the surgery came out and spoke to her, subsequently he did the right tests and found out she was anaemic, unable to absorb b12, had inflammatory arthritis, and many other issues, she got treated and felt much better. Had she just accepted the first Drs diagnosis she would have got so sick she may have died, as it happens she's been left with OA and heart disease I would imagine from years of not standing up for herself and just accepting the Dr new best.

      I'm glad the pills are helping you somewhat, I wish you lots of luck in the future

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  • Posted

    I too sprained my ankle 4 years ago and initially was treated by a physio I was lucky that she noticed the changes happening in my foot and leg and referred me to a dr who diagnosed CRPS I had all the same symptoms as you Physio if done by someone without knowledge of CRPS can be disatrous 4 years on i have to use a walking frame and on a bad day a wheelchair I would suggest you go to a Dr who is up on CRPS and then a pain clinic Good luck
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  • Posted

    Hi Viclacy,

    My name is Rj, I was diagnosed with RSD/CRPS about 7 years ago.  RSD or Reflex Sympathetic Distrophy is an "out of date" name for Complex Regional Pain Syndrome but i think it more acuratly discribes the condition.  It is a progressive degenerative condition that will cause skin to thin and changes in the nails also can significantly reduce bone density ( which i only learned recently the hard way)  Your symptoms really sound a lot like CRPS it is very hard to diagnose with certainty in the earlyer stages.  I agree with charlotte about gabapenten.  Prob would have ended it all if i hadnt found a Neuro that started treating me for CRPS.  My symptoms started after a knee arthroscopy on my left knee.  After the sugery my knee hurt very little but my whole left leg from mid thigh all the way sown burned.  I discribe it as if there is wet sand paper on chaffed skin.  If im perfectly still and in a decent position it burns but it is berable if i move around or have even the wind blow on it its like the sand paper is shifting and burns horribly.  It tokk me about 6 months before i got an accurate diagnoses.  Many Many sleepless nights feeling like ants were crawling all over my leg or the feel of even a soft sheet would burn like crazy.  I started having severe weekness in my left leg and it would quickly fatigue.  I would walk 2 blocks and my whole leg would prety much just stop working and burn like hell.  The first med i was put on was gabapentin, it started helping emediately.  it has cut down the burning and fatigue tremendously.  I can fuction almost normal.  Something i want to share though is that CRPS can significantly impact bone density in the effected limb.  Just 3 months ago i was walking up some stairs and cought my left foot on the next step.  Not  a very hard step or kick just a normal step but i felt a pop and my ankle swelled up.  I busted a chunk of bone off and needed to have it screwed back together this a picture of the break before and after sugery.   The big problem I have now is the bone has not healed hardly at all and it has been 3 months.  CRPS also can effect bone healing.  (having the actual surgery on a CRPS limb was a bit of a nightmare but I managed to not make it worse)  Now i am just walking around with a busted ankle.  Hope i was helpfull.  VICLACY i urge you to be very cautiouse with treatment there are many things a Dr may suggest that could worsen CRPS especially anything invasive.  CRPS can spread too if it isnt treated.  I urge you to be persistant and uncompramising in your quest for an accurate diagnoses.  (i hope it is something else that can be fixed) but if its not you need to be taken care of quickly and correctly...  I wish you the absolute best and hope you are able to find effective care very soon.

    With Much Love

    Sincerly

    Rj

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  • Posted

    I agree with everything that has been said ,you need a physio who has knowledge of CPS and a doctor or better still an OS who can spot it quickly .My physio said "CPS feeds on pain " so gentle exercise preferably in a pool was recommended for me ,and it is working ! Plus maybe for you an exercise bike BORING but again if it works ......I have a tibia plateau fracture so I will have to have all my hardware out in a year or two  as my knee has a 50% chance of athritis and he wants my bones to be consolidated at least a year before that particular Op
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  • Posted

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3048580/

    Please read the above study, look at the picture tables involved in the study which show the outcomes of using Versatis (lidocaine 5%) plasters. In the last picture (table 5) it shows that CRPS is rated as high probability of helping.

    I dont wish to harp on about this but 6yrs in pain and not 1 Dr mentioned them to me, rather give me drugs with a list of side effects as long as your arm. When i found out through an american book and questioned my GP and a pharmacist it turns out that yes they are available in the UK but a consultant needs to prescibe them. From the info i can find they are apparently pricey hence why they are not over prescribed like anticonvulsants (hearsay of course).

    Not only that but the nature of the application tells me they would probably work fairly quickly initially on some pain rather than the 4-6 weeks with pills. I will be asking for them when i get my pain clinic appointment.

    It also states on the NHS website that ideally you should be reffered QUICKLY to prevent the further spread of pain and imobilisation.

    I wish you all some much needed relief.

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    • Posted

      Hi Charlotte

      Im in the states and I think the equivalant is Lidoderm Patches 5% lidocaine.  They have just started being made as generics but still expensive.  (10$ us per patch)  Each patch is good for approx 12 hours.  I used them for about 2 years and they really did help with the hypersensitivity in my CRPS leg.  I begain to adjust to the lidocaine over time witch usually does not happen.  One other issue i had was not having continuouse coverage.  The patches ive used are 12 hours on 12 hours off so there is a bit of an up and down situation.  I did have one doc prescribe 12hours on and switch patches so it was continuous but i think that may have been what caused me to become tolerant.  I definatley think they are worth a try,  hope the best for you.

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  • Posted

    I want to add that if it is CRPS inactivity and lack of stimulation on the effected areas can also cause the condition to worsen.  I one of the newer treatments ive been prescribed is a topical cream that contain ketoprfen(an NSAID) lidocaine, and ketamine.  I usually wear a sleave over my lower left leg to insulate from touch and temp because even the feel of my pants rubbing on it as i walk can set off burning.  I started using the cream "religiously" 4 times a day.  It was unpleasant at first because i hate touching that part of my leg and because the cream would leave a slight sticky residue so i could not waer the sleave comfortably.  After 2 days though i noticed a drastic improvement in the burning and pain.  Where i live in the US the cream can only be compounded by a special pharmacy and ordered specifically by the DR.  I just wanted to mention that even though using the effected limb can be very uncomfortable it is super important to continue usind it and exposing it to stimulation.  Basically i think the less it is used the more sensitive it will get.  (plus the muscles will atrophy and the bones can weaken which can lead to more injuries and more pain).   Please if anyone has any questions for me feel free to ask!! I have been dealing with CRPS for over 7 years and have tried many many different treatment options.  My expirience is at your service!  

    Thank you Everyone

    Being able to talk to others and possibly help others through a tough time in their life helps me stay sane and hopeful!! 

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  • Posted

    I. also had another physio  , well I was in a physio hospital for 12  weeks ,then as an outpatient !She taught me stretching and relaxing techniques this really helped ,at certain times I could put off tablets with stretching relaxation and then icepacks 
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  • Posted

    Hi, really sorry you are having such a horrible time. I have crps and so does my mother, physio helped me but not her. In my experience its very Scarry being in such pain without a diagnosis. If you have the strength go to the gp and say you think you may have crps. A neurologist or rheumatologist should be able to diagnose you. Check out burning nights website

    Good luck!

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