Rare Disease Day 2015 and CRPS



Many of my readers by now will know that I suffer from a very painful condition called CRPS – Complex Regional Pain Syndrome, however what most will not know is that it is classed as a rare disease.  CRPS is a little known about disease and a lot of the treatments are experimental at best as not one treatment works for all, and treatment used does not get rid of the pain just dulls it to more manageable levels.  Many people within the medical profession have not even heard of CRPS, which makes it very difficult when you have to attend hospital or the doctors as you have to start explaining from scratch what it is and the effects it has on your life, and that is even before you get round to explaining what your current issue is. 

I have been very lucky in the sense that I have a very understanding pain consultant who has seen me every 4 months for the past 6 years.  In fact only yesterday we were discussing how long I have been in my current place of work and that he could not believe it had been 3 years!  Where has that time gone.

I also have had great care from a good physiotherapist who is very knowledgeable on CRPS and I have seen him several times over the last 4 or 5 years.  He is probably one of the best physiotherapists to see in the Northern Ireland NHS about CRPS.  I have not seen him for nearly 3 years as I have all the tools to keep me going physiotherapy wise, however I raised a question with my pain consultant yesterday concerning my upcoming voyage and within an hour of leaving the appointment I had a message left on my mobile to contact the physiotherapist directly to arrange for an appointment next week!  Now that was good service.

I have seen two knowledgeable orthopedic consultants over the past 6 years – one for my ankle and the other for my shoulder.  However I have also experienced poor care from a consultant I had been passed onto because of the long lists on the NHS, this was a private consultant who did not have a clue about CRPS – was completely hands on manipulating my foot even though I had told him not to, treating me as if CRPS was a made up disease.

As for my GP, the jury is out on that one.  There was one GP at my surgery who seemed to know a little something, however one of the GPs there had never seen anyone with CRPS in his career, I was his first.  He had learnt about it as a junior doctor in training but had not seen CRPS in the flesh – so I educated him!  The thing is with the GP is that you never get to see the same one twice most of the time so you spend most of your appointment either explaining past history or you skim over it to discuss your current problem and risk any links with CRPS being missed.  After complaining to my surgery only a couple of weeks ago, I am now going to be seeing the same GP each time I go.

As for nurses, most I have met do not have a clue what CRPS is (that’s no detrimental comment about nurses, I think they do a very good job under the current pressures in the NHS and they cannot possibly know everything about every medical condition, however there have been a couple I have met that have not listened to me about how CRPS effects me, there is no excuse for not listening to a patient who lives with a condition even if the nurse does not know what that condition is).  I had to have a heart monitor on a few years ago and was told to “not be stupid they are only sticky labels, they are not going to hurt you” when I asked where she was going to be sticking them as I was concerned she would flare me up.  She looked at me gone out that a simple sticky label was going to cause me considerable pain – as if was over exagerating and a bit fruit loop.  I actually told her to look it up so she had knowledge of it in case someone else stepped through the door with CRPS.  Even nurses who take blood have no clue and the taking of blood can cause CRPS to spread. Both of mine at the local surgery are well clued up now through me educating them over the years.  They get blood first stab or not at all, and believe me I am not easy to get blood out of – 9 times out of 10 though they do it on the first stab.  However, one nurse at a hospital I went to poked and prodded in the crook of my elbow and then in my wrist and back of hand, all the time with me saying you could flare my CRPS and cause spread.  I gave her chance after chance because I know I am awkward to get blood from, however she went to take it out of my right and I said no, enough is enough – I certainly don’t want CRPS to spread into my right arm through her blundering about in the dark to draw blood.  She went to get a senior nurse because I refused, this nurse came, we discussed the issue, I told her she had one shot on the right arm, she used a smaller needle and being a lot more experienced, was able to draw the blood first time out of my right arm without even a bruise coming up afterwards.  That’s called listening to the patient and drawing on that patient’s knowledge and experience of their condition even though she had never heard of CRPS herself.

The point I am trying to get across here is that there needs to be more awareness about CRPS in the medical profession as the care a CRPS patient gets can vary so dramatically between one doctor and the next, one nurse and the next, and so on.  This is a disease that can affect anyone from any walk of life, and there are probably many out there going undiagnosed with this horrendous pain condition because their medical practitioner does not have knowledge of CRPS, and are therefore not putting the treatments in place to alleviate the symptoms.  The sooner someone is diagnosed and getting the right treatment, the greater the chance of CRPS going into remission.  I have had online conversations with people who were not diagnosed for 5 – 10 years after symptoms first appeared, going from doctor to doctor until they eventually stumbled on that rare doctor that does know what CRPS is.  This is wrong and should not be happening and is why I think awareness needs to be raised.

I also feel that people in general should be aware of the symptoms of CRPS so they are able to recognise it in themselves, or a family member, so they can have the relevant discussion with their doctor or other medical professional.

Today is World Rare Disease Day 2015 and I would like to raise awareness for CRPS which has a huge impact on my daily life, along with that of my family.  A rare disease does not just affect the person suffering, it affects the whole support network of that person.  The more awareness is raised, the more scientific studies can be made for effective treatments and the better the outlook for the person burdened with the condition.  There are many rare diseases and if you only learn about one on this World Rare Disease Day then at least that is one more condition that has had a bit more awareness raised about it.

If you have any questions about CRPS please do not hesitate to ask, I will answer the best I can from my experience with this chronic pain condition.  I am not a medical professional so any reply will be based on my own experience and research.

Thank you for reading.


2 thoughts on “Rare Disease Day 2015 and CRPS

  1. Sticky does hurt, I use Buprenorphine patches and when they are changed it can feel like my back has been cut. Another well written blog that I have to share on twitter!
    Do we say Happy rare disease day? 😉

    Liked by 1 person

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