Recent CRPS/RSD Diagnosis

Hi everybody, I am new to this forum and would just like to ask a few questions.

I am a 53 year old female and in July I broke my leg/ankle in 3 places and had surgery to insert plates and screws to put everything back in its rightful place! The healing process was going exceptionally well....until I was recently diagnosed with CRPS. I have spent many hours researching this insidious condition and (I've got to admit) am now absolutely terrified. No wonder my GP didn't take my ignorant "I will adopt a great Positive Mental Attitude to overcome my pain" seriously.

So far I am fortunate that my only symptoms are a change of colour/temperature of my foot, edema and mild to moderate pain along both sides of my feet, most toes and the ball of my foot making walking a challenge.

My questions are just how quickly and by how much is my pain likely to worsen? Does everyone suffer the same continuous and most horrendous/worse pain they have ever, ever experienced? Do you find yourselves screaming out loud with the pain most of the time? That is the impression I am getting from the vast majority of posters on CRPS forums. I am now (selfishly) scared for me as I'm a real 'woose' when I am in pain. 10 years ago I broke my back in three places and spent 9 months with chronic pain which was only just managed by the use of Fentanyl patches. Days were spent in bed just letting wave upon wave of pain wash over me. Without meaning to be condescending, I truly admire how brave and stoic you all are in your very long term battle. Now that I am about to join your 'club', I am going to have to learn to live with this condition (as do you) for the rest of my life.

Matters are further complicated by the fact I am just about to return to the Middle East (UAE) at the end of next week in time for the start of the new school term (my hubby is a teacher there) and will have to endure an 8 hour flight in economy class. Like many, travelling business class is not an option for us. My orthopaedic surgeon tells me I am fit to fly but, in the same breath, declares that I will be in the most agonising pain....ever. WTH? How come I'm 'fit to fly' then? THEN he refuses to write me an 'unfit' to fly letter.... argggh!

I absolutely have to fly back as we don't have a home in the UK and I really need the support of my hubby. Leaving the UAE to return to live in the UK is not an option for us because he is tied into a (cannot be broken) 3 year contract with another 18 months to go so basically we're stuck over there until then. Does anybody know of anyone one who lives in the UAE or other regions of the Middle East who is either living with CRPS or else has to endure chronic pain? The UAE is a country where even codeine is illegal and other opiates are strictly limited to inpatients only so you can imagine my anxiety about returning. Neither do there appear to be any CRPS specialists let alone the 3 disipline approach i.e. pain management/physio/psychotherapy.

Does anybody have any experience of flying long-haul with CRPS? Was it as painful as my orthopaedic surgeon stated? What measures did to take to ensure the journey was as comfortable as possible?

Please excuse the 'essay' but I really have a lot to ask and just want to give as much info as possible. Thank you for your patience and for hearing me out!

Kathryn

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12 Replies

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  • Hi

    I am so sorry to hear that u have CRPS ,

    I call it "The Beast" and my pain specialists

    I've had crps for 6years (work accident) and it's not getting any better for

    me 😞

    I will write more information to u later X

    Take care X

    Christine CRPS UK

  • I've never flown but I have heard one can go with Assisted travel, which means you are taken to your seat by wheelchair and given extra leg room. Definitely worth looking into but you need to give them at least 2 days notice ( for train travel) so could be more for plane travel.

    Are there any relatives you could live with for 6 months or so, then you may be able to get a carer come in once a day. I'm not up to date with what's available these days.

  • Hi :) I broke my ankle 2 years ago just getting out of bed and got 2 plates and 5 screws and a week later I went to pull the blanket over my head and and broke my wrist. I was told I also have crps and fibromyalgia and post herpetic neuralgia trust me all of these are and can be allot of pain! But I would suggest not reading to much into it now. People tend to exaggerate sometimes and it can scare people. Sure it's allot of pain sometimes. But that's why you always make sure your prepared for a flare up and I would suggest for this type of pain? If you want something strong and to help you sleep and something for nerve pain. I would suggest amitriplyline and tylenol#3s hot baths and hot packs make sure to get yourself some body pillows for at night . I would also suggest s heating blanket. But don't panic sweetie you will be just fine as long as you eat right and do your daily little exercises. Don't over do it. Just do what you can. And be strong! I will be thinking of you god bless

  • We can all be strong but that doesn't mean 'we'll be fine sweetie' and this is NOT THE PLACE TO SAY OTHERS HERE EXAGGERATE!!!! We get enough of people AND nhs consultants telling us that. I was diagnosed fibromyalgia in 2006, trigeminal neuralgia in 2008, crps 2009 and its spread so now osteoporosis osteoarthritis annular tear all this plus more caused me to literally step on my foot thanks to neurological deficits in right leg so foot facing backwards dislocated ankle 3 displaced fractures in both leg bones etc it wasn't operated on thanks to ortho thinking l had somatisation n exaggerating pain, he even made me weight bare on it all then only reported 1 wee fracture nothing else??? He went to Australia 4weeks later, that was 2 yearsthis Aug, saw n dismissed by other 3 orthos never even examined me and it wasn't crps yet nhs physios reportrd to ortho gp n pain team was crps but also catastrophising behaviour as 'she thinks her ankle was dislocted n more injuries' l have proof of all this in medical records and AnE consultant who had marked me up for surgery next day n signed consent s as he had reduced (turn round) everted clinically out of joint ankle n xray reports all fractures etc too but next day other ortho said no surgery n got a non weight bearing cast on then made me weight bear on it all!??! After 8 months l begged for xray n showed ununited bones n clear visible fractures but then l was told all was ok by 3 orthos n pain was psychological! lm a physio so l knew wasnt right so l went private to Edinburgh n ortho told me needed plates nscrews etc in my leg and ankle fixed too and was going to do op in the Edinburgh nhs hosp last Dec. I had got my records by then and the ct scan in feb2016 (after foot went black ice cold n not able to move it but tremors unreal and gp couldn't get a pulse (next day she wrote l was somatising as in...exaggerating as its all in my head) scan reported ununited fracture extensive osteoporosis and bone changes indicate crps along with sclerosis spurs calcium in tendons lipping of bone etc, yet ortho told me at appt 5 days later none of this infact his letter to gp wrote not crps not osteoporosis and healed so discharged!!!??? Oh and again l have pain issues (in my head) Anyway.... I couldn't get surgery due to crps severity n other things, so lm still in moon boot can only use 1 crutch as no control in right to crps but l went private get dexa scan n now my left hip at high risk of fracture along with left wrist so wheelchair next when l hopefully get a new place to live as 23 outside steps to get out which is only for appts or Church when l can manage, can't drive anymore l am 45 live alone no kids. Im getting no help from pain team or any other consultants as don't know what crps is lve been waiting a year see neurologist and my psychologist can't see me anymore as l have never had or have now any mental disorders and admires my determination n resilience even though l soil and wet myself, been so horrendously treated by nhs n get lawyers involved n she going to see what she can do as can't believe the negligence and assumptions on mental state made by nhs etc. Add to that my 79 year old mum has severe emphysema lives alone and my Dad just had quadruple bypass last year n l couldnt even make the journey to visit him n now been diagnosed with Alzheimer's, n lcant do a thing to help them. So.... What is EXAGGERATED about all that ?????

  • Oh l forgot.... You also said not to panic, eat well and try a little exercise everyday n be fine. I MUST TRY THAT THEN???? Oh... I also doubt anyone on this site has any intentions or means to scare anyone as we are already scared to bits ourselves because we can't rely on our own bodies for anything, we must be honest with each other here and support each other NOT judge each other as we get enough of that by people who could never imagine what life is like for us as we try n put a brave face on. It should be ok to take that brave off for a while and come on this site and be honest without judgement!

  • 31.12.2016

    Hi Kathryn. Before I begin, I would like to wish you a much better 2017!

    I am so sorry for the situation you are in. I can only but imagine the fear and dread you are going through.

    I also have done a fair bit of research on this ghastly, horrid 'affliction' [I broke my wrist and was diagnosed with CRPS 4 weeks ago]. Some of the stories I have read fill me with the horrors and my heart really does go out to these people. However, as you will be aware, the major thing to take into consideration is that we are all different and in particular, our pain thresholds and ability to accommodate degrees of pain differ from person to person. I do not 'scream out in pain', even when I underwent manual manipulation of my arm/wrist in Greece, without any anaesthetic. It was absolutely excrutiating - the worst pain I have ever endured - and I think the whole clinic heard my 'exclamations'. Since then, I have been in significant pain, but the majority of the severe pain was when I was still in the cast and my hand was very, very swollen. Now the pain is due to the extreme stiffness in my fingers and trying to bend them, and the fact I do not have any flex in my wrist, so trying to flex and /or twist my wrist does hurt - quite a lot. But, that is just me. I think anything to do with the feet is worse, due to mobility issues.

    Your Orthopaedic surgeon sounds like he should be barred from practice. If you are 'fit to fly', then that means you are fit to fly. He is implying you are not fit to fly, as 'being in agonising pain and fit to fly' is an oxymoron for me! That however, does not solve your issue. I think he may have caused you undue panic and fear.

    The main aspect of your post that concerns me is the lack of medication you can have in the UAE. That said, I am on Gabapentin which is not an opiate. Neither I believe is Amitriptyline. So, hopefully you could be issued with these to take with you and obtain additionals when out there? I assume you can take Ibuprofen? I use that in addition to the Gabapentin, although I do take a Codeine at night as I am a poor sleeper.

    I would strongly advise the airline of your condition. As explained earlier if you give them sufficient notice they will 'airlift' you on to the plane - I have had that experience 3 times. If the additional leg room seats/exit seats are available, I would book those. I would also explain to your airline that you have mobility issues, so they may make allowances for you and ensure you get the longer leg room seats.

    I think what may be a good idea, is that you take a couple of sleeping tablets to get you through the journey. You may not be allowed such things in the UAE but as you know, you are allowed them in the UK. I am not an advocate of 'drugs' per se, but I am sure the 'warning' given by your Ortho surgeon will be causing you undue fear and if you can sleep through the journey then that may be a consideration for you.

    Unfortunately I do not know anybody in the UAE but it may be worth trying to find others once you are back out there. A study undertaken claims that CRPS allegedly affects 1/3,800 people in the UK ...that means there are many of us out here in the world with this debilitating condition. Most however, have not been correctly diagnosed due to lack of understanding and awareness.

    One last thing I would like to say, is that I am not convinced your pain will worsen. From my personal perspective, there will be days maybe when the stiffness is worse, when the heat/burning sensation flares up, but in all honesty, if you have regular [at least weekly] Physio, continue with gentle exercise and do not push yourself over and beyond the pain boundaries [a mistake I was making], I would like to think that given time, you will see some improvement.

    Every day for me is what I call 'baby steps'. This condition does not adhere to time constraints. Many people see vast improvement within 2 years, others do not. It appears to be a lottery in some respects. I personally am maintaining as positive an attitude as I can. When I look back to 4 weeks ago I am able to do more than I was then, and, the swelling in my hand is less than it was then. I know I am probably in it for the long haul but Rome wasn't built in a day [they should have gone to IKEA :-) ]. I am going to continue trying to 'trick my brain' - as you probably know, it is incorrect signals from the brain that apparently cause CRPS but equally, I will take each day as it comes.

    I do hope you get the flight issue sorted and that once you get to the UAE you are able to find others in a similar situation.

    Best wishes to you / Lyn

  • Unfortunately if you have mobility issues, an airline won't let you have the 'door seat' because you're the person being relied upon to open the door in an emergency and not being able to mobilise to do it, is too much of a risk! I know this from personal experience!!! We made a point of booking these seats so I'd have extra legroom and then had to be changed to a normal seat at the check-in desk!!

    RJC x

  • It is not incorrect signals from the brain that causes CRPS. It is the muscle shortening that occurs as a result of the bone break. Over contracted muscle hurts because over contracted muscle prevents waste product from being removed and nutrient being supplied. The over contracted muscle shuts off the capillaries which supply the nutrients to muscle.

    The finger problem can be due to the small muscles in the wrist contracted over the tendon sheaths. I know about this from experience. A McTimony chiropractor had to sort this problem out for me after I had broken my wrist and the bones had healed.

    Muscles can easily contract but there is no nerve mechanism to tell them to uncontract. The muscles rely on a host of other mechanisms to lengthen out a muscle when it no longer needs to contract.

    Hope I have been helpful.

  • I do agree with some of your aspects. But with others I would disagree. I would not advice going on a plane if your having bad problems with your crps! That's a big problem right there! Crps is also affected by most of the blood vessels in your body and when you get up to that altitude? Your in pain . No matter what you take and it lasts for days!!! Flying is the worst thing for that! Read up on the horror stories of what happened to people after flying with crps !? Really know you want to go! But wouldn't advice it!! As you said all people are affected different. But wouldn't want to find out I'm one of the majority that is in constant pain afterwards! I was just a berdon on people when I got there. I could barely walk the pressure was so intense. Had to get medical services to take me back! That was a good amount of $. Never again

  • I used to live in the UAE, back in the late 80s and 90s. I don't know about meds laws there now, but what does worry me is the isolation and subsequent loneliness you might experience as a CRPS sufferer. When I was there I found the expat life shallow at the best of times, even although I was in full health then. Life was also centered around sports, the beach and nightclubbing. I don't know for definite, as my experience is out of date, but it's just a concern I would have. The place might have changed beyond all recognition since I lived there, so hopefully, I am talking nonsense! :-) Wendy x

  • Hi Wendy, I know exactly what you mean by the shallow expat life in UAE - I doubt very much has changed since you were last living there. As I am unable to work I do feel very lonely and isolated, even after 2 years. The fact that we're in our early fifties and empty-nesters put us at an immediate disadvantage. We feel like dinosaurs amongst the much younger (average age 30s, 2 or 3 young children) demographic. CRPS prevents me from participating in many of the 'sporty' activities I love so much. I used to run marathons so have always led a very active life. Now my most exhausting activity is trying to find things to fill my day. I am so envious of my husband having a job he absolutely loves - I am almost clinging onto hiz ankles as leaves for work every morning!

  • At 53 it is highly likely after a bone break that you will get muscle over contracting. This is a highly painful condition. A cure to investigate is massage therapy to help lengthen out the muscle. This can be painful, but it will decrease the pain you already have. You will need to do various exercises to help get the muscles working again at their most appropriate lengths.

    When you need to start on the muscle lengthening regime you will need to ask the appropriate sports therapist. As the bone needs to heal and be strong enough to take the activity of a massage therapist.

    Hope this helps.

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