CRPS Left Wrist

Hi everybody. I am a 61 year old female going on 18 I broke my wrist - fortunately not my dominant hand - on 29th September 2016. Excrutiating pain and swelling was diagnosed as CRPS on 4th December, after previous consultant telling me my problem was due to lack of exercising - idiot is a minor form of the word that springs to mind!! Am on 300mg, 3 times a day of Gabapentin, and codeine as and when needed. As I currently work, I only use the codeine at night to sleep, but supplement with Ibuprofen. To be honest, the Gaba doesn't seem to make much difference to the pain so was wondering if anybody can advise what they have found to be the best pain relief. [I won't take Tramadol as it completely knocks me out and I cannot have that happen for the job that I do, which requires clear thought - although that is proving difficult with the ongoing pain.]

At the moment I am having to pay for weekly private physio as can't get regular NHS physio. Am also still awaiting an appointment at the Pain Clinic, not that I hold out much hope from them from what I have read!

Basically, I am trying very hard to remain positive and use my hand as much as I can. But, I have a rigid wrist, cannot reverse flex at all, can't bend my fingers properly and night time is when it all starts kicking off big time. Am using Glucosamine gel and Flexiseq to try and encourage movement but to no real avail. I also massage my hand and fingers as much as I can.

I know there are many of you who are far, far worse off than me, especially those of you who have this God awful condition in your foot/feet, and my heart goes out to you. However, what is most perturbing is the sheer lack of understanding about this condition and the fact there is no known cure. I have been told that I may never get better and in fact, that I may get worse. Already my arm is severely wasted and there is nothing I can do to strengthen it. I am just hoping that somebody here has found something that helps, that is not widely known out there? Or, that somebody can recommend any exercises that work for you that may work for me? I know we are all different and we all cope with things differently and equally, different things work for different people but, you know how it is, desperation kicks in and we become willing to try almost anything. I have a lovely private Physio but although she knows the principles of CRPS, she is not that experienced in dealing with it.

Also, has anybody noticed if diet [or alcohol] has any negative or positive effect on the condition?

I look forward to hearing from you. Take care and here's to a better year in 2017 for us all.

[dianadoors]

Lynvild I do empathise with you!

I was teaching when I had my accident and haven't worked since.I have CRPS in my right,dominant hand and terrible headaches!

I also have exactly the same reaction to all the medications you have taken.My situation is exacerbated by having to go through 4 years of a legal fight with so called 'experts' who don't seem to know the prognosis for me?

I do think the one person who 'saved me' was my physiotherapist who saw the condition and took action straight away.Moving the hand,wrist is very important!Keep going keep hope and you will survive!

[Hidden in reply to dianadoors]

Diana Dors - what a fab name I have to admit, you sound as though you are in a far worse situation than me...my heart goes out to you. In all honesty I thank my lucky stars that it was not my right hand I broke, as I am extremely right handed and right sided. My left arm/hand was always much weaker and even though I complain I have absolutely no muscle tone whatsoever in that arm, the truth is I didn't have any before! If I had broken my right, I would have been totally incapcitated, so I really do sympathise with you. As it is, I am debilitated and have lost my idependence as I cannot drive [and still cannot do my hair properly or dress myself easily], but I am keeping positive that the situation will resolve at some point.

Are your headaches from the medication[s] you are on, as severe headaches seem to be a common side effects of many medications?

My private Physio has kept me sane and positive. I am not sure that everything she did in previous sessions necessarily worked - brutal is an adjective that springs to mind - but more recently the laughter and banter that we have seems to work psychologically on me. I feel lifted when I come out of there. Yesterday she gave me acupuncture in both hands and arms. I am a sceptic of this treatment and indeed she admitted she is [that made me laugh even more as there I am paying for a treatment she doesn't totally believe in...] BUT, for the first time in 3 months she was able to bend my fingers without me yelping. The effects wore off pretty quickly but that experience gave me hope for the future. I know it doesn't work for everybody but it did seem to work for me and I shall request it again next week. Maybe if you haven't tried it, it might be worth it?

As for the 'experts'...the sooner they learn about this horrid condition and do some positive research on resolving it, the better it will be for all of us - and for those who will unfortunately suffer from it in years to come. I am really surprised at the lack of educatin surrounding CRPS as I recently read that it affects approxiately 1/3000 people. That is an awful lot of us with it...

I sincerely hope you manage to get the legal mess sorted. [I guess you are involved in a compensation case for falling at work..] They do say that stress is a major contributor to the pain so the sooner you are stress free, the better.

I send you good wishes for 2017 and as you say, 'keep going and keep hope'

[Leonwp]

Sounds to me like damage from your accident didnt heal properly and you have aggravated damage to area. Sorry you are having to cope with this but i cant think of any mrdication you can take that has less affect on function. The danger with strapping/stroke support is that things start to lock up and strength goes from the area so it really doesnt help. Only thing occurs to me is that when i had a frozen shoulder after an injury i was given accupuncture by a physio when all else failed and it seemed to really help the healing. I hope your short term problem doesnt become a long term introduction to the world of joint pain. Blessings.

[Hidden in reply to Leonwp]

Hi there Leonwp. Thank you so much for responding.

I know that continual strapping isn't the wisest move and I do take the splint off for hours during the day - usually at night when watching TV. At this time, I also massage and exercise as much as I can - often pushing myself over and above. I do sleep with one on though as I am petrified I will damage the wrist in the night. I know the chances of this happening are remote but it gives me comfort and security to know the wrist is protected.

Re acupuncture, I have had this a couple of times, although previously only in my right arm i.e., the unbroken one. And there were no positive results. However, yesterday I had it in both hands/arms and miracles of miracles, my Physio was able to bend the fingers on my left hand without me yelping! So, although I was sceptical of the treatment [and funnily enough, so was my Physio] it did appear to work. The effect didn't last long but for that moment I was given a glimmer of hope that this condition can be beaten.

I am used to joint pain, as I have had an issue with my knees since I was a kiddie which has resulted in osteo-arthritis. I also have a 'bakers cyst' on my right knee. In fact, a lightbulb has just gone off in my head, that I may actually have occasional CRPS flare ups in my right knee! Oh heavens...Anyway, I shan't dwell on that as at the moment my aim is to get my left wrist flexing

I wish you a good, healthy, and less pain free 2017, and thank you again for replying to my post. All best wishes to you.

[Leonwp in reply to Hidden]

I would definately keep it strapped at night, involuntary movements can be very damaging and when you do take them off to massage and exercise dont push yourself over OR above, keep going maximum movement within your range and improve/strengthen the quality within that range if you can maybe you will then find that range slowly expanding, like flattening a lump of pastry it doesnt work however hard you hit it once you have to manipulate it to spread over an area by teasing it outward. Im wondering if you could look at some tai chi exercises perhaps on you tube?, there are none that specifically isolate the wrist but there are plenty that include the wrist, maybe if you looked at a couple of videos and tried while sitting to do just the similar wrist movement parts in terms of the direction and range whilst doing little more than relaxing?, you certainly wont get all the range and i dont think you should push into pain at alk but some of the movement may be in ways that you wouldnt naturally try and may help some in maintaining or extending your mobility. But please i am no expert so dont do anything that hurts or strains you, it was just a thought that it may be worth trying. With regard to the accupuncture i think it is very much an art and from the sound of it something worked this time so it may be worth a few more goes?. If you give 2 artists the same paper, the same brush and the same paint you are very unlikely to get the same result from both.

I really hope you find some answers. Blessings.

[Hidden in reply to Leonwp]

Thank you again Leonwp. Good advice I shall endeavour to make time to look up Tai Chi as somebody else on here mentioned she does it.

Totally agree with your analogies, especially re acupuncture and artists. I do intened to continue with it, as for that moment it was highly benefical - both physically and importantly, mentally.

From what I have read here, it does seem that pushing the pain boundaries is not the way to go. I am a very determined person though, so I shall have to remind myself of that, especially as I have been trying to practice mind over matter in an attempt to fool my brain but...I realise there are limits.

Got to continue with the housework now, which of course, takes a little longer than usual!

Thank you again and thanks for the blessings. I shall kkep you posted with my progress,

Best wishes to you.

[poormother]

Hi, sorry that you too have this awful condition, I have had in my right foot/ankle following surgery to aid my walking - I am now on crutches permanently and use a wheelchair. It is such a devastating condition that is not that widely known about, but thankfully more awareness is being created. I have tried all the meds going, but you need to try them and see how they work for you. There can be so much difference in the pain relief for one person to the other. I too cannot take tramadol, and was on 3200mg of gaba for 3 years till the side effects were too much to bear. I am now on a low dose now but tbh, once the pain has plateaued, it is of not much use to me now. Some people are lucky and it goes away, but others have it all their lives, like me now. I have wasted muscles too from not being able to use it from pain and stiffness. I also dont like my leg and hate dragging it around lol. I take mst (morphine) now, slow release, which doesnt make me drowsy. Have u tried that? Also oramorph is quicker acting but works quicker. It can cause slight nausea and headache but compared to the tramdol it is do-able. Also diazepam for muscles helps me enormously. I have had depression and have now got an anxiety disorder because of it, as I get wound up going out in the chair with pain and people looking at me. I was so fit and healthy once, walking the dog and going to the gym, but now its just awful. I have been under the pain clinic for 5 years and been on the pmp (Wales) . It helps u with coping strategies. Also there is a specialist clinic in Bath in the United hospital for those suffering with crps, a referral from your consultant can get u in there. Hope any of this helps u. Best wishes.

[Haylou]

Hiya Lynvild, so sorry to hear that you are in pain. I was diagnosed with complex regional pain syndrome in my left wrist just under a year ago. On the slightly lucky side for me it was my non dominant hand but intensity of pain combined with countless painkillers being tried I was left unable to work for two years and had to drop out of university twice.

I had tried all sorts of painkillers and even went for an IV block to try and help control the pain. Unfortunately no of these seemed to work for me and I ended having a spinal cord stimulator implanted early October. Although I still get occasional flashes of pain they are bearable even without pain killers. I was able to have a part time job for Christmas and I have even been told that I could head back to my dream job as a chef.

I suggest possibly asking about an IV block as it may work for you.

I hope some of this has help and you get some form of relief.

Good luck

[Hidden in reply to Haylou]

OMG, you sound as though yu are far wrose than me. I was away from the office for 7 weeks but managed to work from home most of that time. However, I needed to take time out to cope with the spaced out effects of the drugs to start with. [I susbsequently cut them down as needed to be able to think!]

I am awaiting an appointment at my local pain clinic and it will be interesting to see what they offer. I just want to be able to flex my wrist again and make a fist. I know my wrist will never be perfect due to the kind of break it was, but I am determined to get back to some kind of normality. I would however, prefer a quicker and less painful journey!

I am so glad the spinal block has worked for you - albeit you stil get some pain - and I really hope that you can indeed go on and achieve your dream ambition, preferably in 2017.

Thank you so much for responding and I wish you well and send you lots of luck for this coming year.

[Rosepetal60]

Have you had an X-ray to check the state of your wrist since it was set?

[Hidden in reply to Rosepetal60]

Yes I did thank you - I paid privately and was told the break has healed ok and also had an NHS X-ray on 4th December [2016] - when the consultant diagnosed CRPS. I have also seen my X-rays and it appears that my little finger has been damaged, although nobody has picked up on that!! The finger is now healing of its own accord but I am convinced the doctors missed an issue.

[Rosepetal60 in reply to Hidden]

A friend of mine had an issue with her thumb joint and at all 3 consultations with different "experts" she got 3 different outlooks on it, 3 different observations of the X-ray. I have found wrist splints very useful in the past for daytime use. with an adverse reaction to an osteoporosis drug lasting 11 months. Sometimes these problems just take longer to heal than you think they should do. Also worth considering is complentary therapy.

[cillasmum]

Hi sorry to hear about your diagnosis. Likewise I was diagnosed with CRPS in left wrist after breaking wrist in several places which happened approximately 2 years ago. My consultant prescribed gabapentin, tramadol and amtryptaline and I was pretty much on the max dosage for all. I just wanted to get better asap so very much just complied with everything offered. Needless to say after a few weeks I was pretty much spaced out and had a fall which knocked me for six. At that time I attended 2 physio sessions per week, NHS and private for several months. No real improvement in condition.... approximately 5 months after accident I was offered a pramidronite injection and following that I did begin to notice a real improvement in condition ie. could actually start to move fingers and eventually could make a fist. I then started to withdraw my medication as I felt that this was really impacting on my short term memory and cognitive skills.

It has taken 2 years to get to the stage where I am a little more comfortable in managing this condition however I was also fortunate enough to be offered a place on a pain management course which was also extremely beneficial. I really do sympathise with you but I believe time and patience will in time hopefully improve your condition. I know it sounds patronising but in all honesty you may be working too hard on exercising your wrist. Again I went hammer and tong with excessive exercising and stretching through sheer frustration but this only resulted in set backs..

Also after research I started taking a daily dosage of vitamin C and have continued with this ever since.. currently the only meds I take now is the amtryptaline (minimum dose) which helps to manage this condition at night time.

With regards to exercise I took up swimming and tai chi. These have helped as I have been able to participate without thinking that there is an issue with my left hand.

I wish you well for 2017 and a gentle recovery 🙂

[Hidden in reply to cillasmum]

Hi there. Thank you so much for your response, So sorry to hear about your bad luck due to the meds. I am very aware of the 'spaced out' feeling, as when I started on the Gabapentin and Codeine/ Dihydracodeine I was off this planet and unable to work for a week or so! I soon cut them down to the 3 Gaba per day and 1 x codeine at night though [supplemented as neeeded by Ibuprofen] as I am anti meds at the best of times. I believe I was on Amitryptiline many moons ago for something else...maybe worth investigating that with my GP as the Gaba doesn't seem to do much and I don't want to increase it. Having said that, I appear to be fortunate in as much as I don't have the nasty side effects of Gaba.

I think you have a very valid point about the exercising too hard. I always tend to push myself above and beyond. Fortunately I have a very good private physio though, who concentrates more now on gently massaging my wrist/fingers and giving me acupuncture. I have to admit to being sceptical about acupuncture but yesterday after puncturing both my left and right arm, she was able to bend my left hand fingers the maximum I have see them since the accident. That flexibility didn't last for long, but just seeing them move without excrutiating pain gave me a glimmer of hope. My days of making a fist are but a mere memory...I can however, get halfway there, which is more than I could do a month ago

I have noticed others mention Vit C, so I shall invest. They can't do me any harm and are cheap to acquire so may be worth a go.

2 years seems to be a pretty standard length of time for us to accommodate this horrid condition. 2 years though, is a long time and I want to do everything possible to try and cut that down, especially as I 'need' to drive again to regain my independence. I tried driving yesterday but turning the steering wheel was rather painful to say the least. So I think I have to wait a little more time and try and get more flex in my wrist.

I am still awaiting an appointment with my local pain clinic. I was told there is a 6 week waiting list but I don't hold out much hope of getting an early appointment as my condition is not gauged to be serious enough!

I am not a swimmer and the thought of trying to swim with my wrist as it is makes me want to run a mile! I congratulate you though on doing so, along with tai chi, which I have heard is very good for instilling calmness and well-being.

Thank you again for your reply and I also wish you well for 2017. I also hope your recovery continues.

[johnsmith]

You need to see a sports therapist. You will need the muscles massaged to reduce the amount of over contracted muscle. The massage will be painful as stretching out over contracted muscle is painful. After the muscle has been stretched out the pain is likely to reduce considerably.

When I broke my wrist it took me six months to get full mobility back. I had to do exercises will balls of various sizes. I had to get a McTimony chiropractor to reduce the tight muscles in the wrist.

Hop I have been helpful.