5 years on….

I often find it hard to believe that it is 5 years since I had surgery on my right foot and developed CRPS. I still have to remind myself daily that I am one of the lucky ones with this horrendous condition as I was diagnosed so early and I seem to have found a level that allows me to function pretty well. From my recent and current communications with others who have developed CRPS I know that sadly diagnosis is left too late and the right treatment is not available at the right time. There is currently no cure for this condition but research clearly shows that early diagnosis and the right input for that individual brings about the best chance of either remission or well managed pain levels.

With this in mind a friend, Helen Townsend, who also has CRPS and I have set up a Facebook page called CRPS talk & support UK for anyone who would like to join a safe, closed group of supportive people. In addition we plan to work hard to broaden knowledge of the condition within the medical world to try and foster a more reliable and consistent framework for diagnosis and treatment. We also aim to provide support for those with CRPS and allow the sharing of information, a safe place to vent or discuss fears and to generally make people feel less alone. CRPS can be incredibly isolating and families and friends often mean well, but quickly run out of patience or understanding when a person doesn’t “get better”. We desperately need better education and awareness from first line medics to those who operate, who treat post-surgery, who rehabilitate and who provide therapies going forwards.

What of I? I am doing OK. CRPS remains but it remains in the same localised area of my right toes and forefoot. I remain lucky to be extremely active and functional and actually have had more issues from prolapsed lumbar discs and a Baker’s cyst behind the left knee than from the CRPS foot. In some ways the fused joint brings me less trouble than the joints that remain and that are wearing out. I sometimes wonder if the CRPS has a systemic effect upon me or if I am actually just feeling the effects of being in my mid to late 40s now. Who knows. Genetics definitely also plays a part with tests for glaucoma and varicose veins being thrown into the melting pot within the last 6 months too!

I still go to the gym 3-4 times a week. I enjoy walking especially on the coastal path and managed to do nearly 8 miles this year, probably the longest one-off with additional 5 milers tucked around that across 4 days. I remain on Lyrica at 200mg a day and will probably keep taking this. Why rock the boat in some ways although I don’t like putting it into my body every evening. My foot never looks the same as the other one. Last July I developed a blood blister behind a toenail on my CRPS foot. It has taken a year for a healthy nail to finally replace the initial one that fell off. Growth is definitely not the same and I have to be very careful about any cuts or scrapes to the skin on that foot. It goes red, the epsom salts are still a part of my life especially after a long walk or in hot weather. Good job I do not live in Greece, 40 degrees + would not be my friend!

On cat related news we never did find the lovely Lucas. RIP big fella, I wish I knew what had happened to you but I fear it wasn’t good. However we now have two more additions to the family in the shape of Shady and Dre who are now 2 years old and brothers. Pictures to follow. So, a cat household of 4 keeps me busy as well….

I’ll try and update this blog with any CRPS related news but if anyone does read this and wants to come along to the Facebook group for support we’d be delighted to see you….

 

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Nearly 3 years to the day…..

So. There I was. Finishing one of 5 walks this week around the fields behind us and I realised it must be nearly 3 years since I had my foot operated upon. Yes, 20th April Easter Sunday. Maybe my toe will be resurrected?!! But, as I walked and mused I thought I would perhaps update this long forgotten blog. For those new to onionsbegone let me refresh your memory. 3 years ago I had a fusion of the big toe on the right foot due to severe arthritis and a long standing bunion. The fusion went amazingly well. Sadly my reaction to it was to develop CRPS aka complex regional pain syndrome. An incurable and supposedly rare complication whereby your body keeps reacting as if it is in trauma. I have had this now for 3 years, and it won’t ever leave me. 

But. How has life been since my last post in late 2012? It has been pretty danged good. I still have CRPS but it doesn’t control me. I have, finally qualified as a personal trainer in summer 2013 and also achieved the student of the year award for the college and course I was on. (yay go me!!) I have also achieved an exercise to music qualification for working with the over 60s and those with disabilities – and that really does mean you’re on your feet all the time! I train people – yes, real living people! I run groups for over 55s which have been an amazing success and I’ve worked on corporate health projects for two organisations so far. I’m carving out a niche (slowly) of where I want to be and what I want to achieve. Does the foot still bug me? Yes it does. is it perfect? No, definitely not. Can I still do all of the above and have a smile on my face at the end of the day? Yes, generally! I am still on low dose lyrica. I plan to drop it down again but in honesty if it allows me to do all this then I’ll take it. Believe me, some days I am extremely busy and active. In fact I rarely have a day when I am not up and moving and teaching a class, training people or simply training myself. I love what I do and love the results I get. I really hope to expand my work to wider groups in the next 12 months. But looking back to those painful, fear riddled steps with my crutches I cannot believe I have got so far, My foot usually feels pretty normal. Still goes cold, still has some odd colours, but its my foot and I am OK with it. C’est la vie. There is still a huge need for CRPS awareness to be raised as it is not, as many would say, so very rare. I have found many people with it and doctors need to recognise the signs way sooner and get people into the right treatment routes. This is an area I continue to feel passionately about. 

One very awful and heart breaking thing has happened. Remember the beautiful big kitten we adopted? My big, soulful, soft and loving boy. Lucas went missing on 9th January this year. Despite us searching for him for days, covering miles in fields, posters, leaflets and adverts in the local press we have no idea if he is alive or dead. We miss him so much it hurts. 2014 started badly in this respect. Come home Lucas if you are out there. Our other two continue to thrive thankfully and we continue to live in this beautiful part of Warwickshire and watch another Spring unfurling. 

So, 3 years on. I’d not have predicted what happened to me. I never thought I’d get this rare complication. But it happened and I live with it. I don’t let it stop me, and I will achieve more of what I aim to do. To all those who supported me I hope this update cheers you and that you too follow your dreams and goals. Lucas – if you’re out there we miss you. Bring your big kitten madness back to us. x

This entry was posted on April 18, 2014. 1 Comment

One year, 5 months post fusion.

September 2012 brings me to nearly 18 months post fusion and yes, nearly 18 months with the dreaded CRPS. Seems quite scary when you see it in a timeline type of format but it also allows me to establish how far things have progressed. I was horrified to find my last blog update was a year ago but perhaps that means that life has taken over the constant ruminating and reflecting I was doing last year. That can only be a good thing.

So, can I live up to the grand billing I made that at 12 months post op I would be glad I had undergone the surgery? I’ve actually got longer in my “bank” so to speak to decide on that being 15 months out. Yes, I am very glad I had the fusion. I could not have coped with the crippling arthritis pain in the big toe joint that was only going to get worse. I had reached the point of severe limitations in terms of walking and for that reason alone the surgery has been worth it. I would not have chosen to develop CRPS. No way. Has it left my foot? No. Am I still on my Lyrica medication for it? Yes. Would I function without the medication in my system – probably not. Am I optimistic it will one day vanish completely? Yes, or I would go mad.

So what can I do now that I couldn’t before? I can hike; hubby and I spent a week in Cornwall over Christmas and I walked about 4-5 miles twice in the week along coastal paths on very undulating ground and with some steep ascents and descents. Happy face. I also visited a friend in Norfolk and walked her border terrier on the beach 3 times over a long weekend totalling around 11 miles. Very happy face. Last month hubby and I went to a peninsula in the Gower and walked across really rocky and tricky terrain to reach the tidal island of Wormshead. This would not have been possible with the arthritic toe, I would have been howling in pain. We did it. Extremely happy face!  I am training at the gym 4-5 times a week and pushing up my exercises on a regular basis. Importantly for me I have FINALLY commenced my personal trainer’s course at the local college one evening a week. No one on that knows of Reggie or of the CRPS and I intend to be a normal student to all intents. As normal as I ever could be. 😉   I am also doing regular spinning, weight training, indoor rowing and so on. I am working and last week Reggie made his first trip par avion with great success. Only to Inverness for work but it was the first “plane trip” I”d done and the foot coped admirably with a fair bit of driving, trekking about airports, sitting on the plane and so on. I was glad to experience it as some people find planes and the pressure changes can set off the CRPS. Time will tell on a longer flight of course but it was the first little step into proper travel!

My worst relapse came during a trip to Wales when I foolishly did some trail jogging on a very warm evening. Blister alert right under the fusion site. Ouch. Nasty nasty nasty. Massive red foot, red lines snaking up the nerve path….bring on double drugs, epsoms, baths, socks, elevation, tears………poor husband. He copped the whole brunt of that episode. BUT, it settled down. I can safely say that Welsh sea water seems to have magical properties! Another reason for moving to the coast one day.

I still need to carefully manage the CRPS and its impact on my foot. Hot weather is pretty hideous for me as the foot seems to swell and react badly. Barefoot decorating at my Mum’s a few weeks ago in a hot spell was a foolish idea and I paid for it with a nasty couple of days. I use my Epsom salt sock wrap religiously, most evenings unless we are out the foot sits in it for a couple of hours. If I feel a twitch coming on during the day then ditto, in goes the foot into nice soothing salts. I often wear my compression tubigrip if I am walking about in shops etc but not on hikes. My foot tends to feel cold very easily but that is fine and much better than the raging heat. I have cold hands too and always have done so in some ways that might not be the CRPS.  Packing for trips away is still pretty depressing as my focus is on pills, epsoms, tubigrip, etc etc. I don’t think I am on the point of trekking spontaneously up Kilimanjaro….although there are plans afoot for a Ben Nevis charity challenge next Autumn. Foot should be fine, might need to be rolled down as the knees won’t like that descent. Mountain rescue could be busy that day.

CRPS is a revolting, indiscriminate condition that I would not wish on my vilest enemy. I have been extremely fortunate to have responded so positively to the aggressive medication and activity regime I was able to engage in within a few days of being diagnosed. Thank goodness that my surgery itself was a success and I was able to do the weight bearing, the exercises, the bending of the toes and so on. For people with a comorbidity of any kind alongside the CRPS these options are often more limited and the CRPS takes a stronger hold. I am often still worried that mine will spread although Dougal assures me it now won’t. I guess he’s been on the money so far so I choose to believe him. I have accumulated assorted other injuries and knocks and things since last April 2011 but no untoward response. Fingers crossed and non fused toes crossed in sympathy.

To round off I did promise a snap of Reggie last year but failed. I think he’s looking pretty decent. Long may it continue. Next goal is Lyrica reduction which fills me with dread. I like being controlled, medicinally or otherwise but perhaps it is time to just try a little bit less on Dougal’s suggestion. I can always go back up, but with this monster the fear is that if it gains control it won’t go back in its box. Positivity…..cross paws and fingers for me.

 

 

7 months on…..

I have just had to count the months since my foot got chopped up using my fingers. It is just over 7 months from the 20th April. In some ways it seems soooooooooooooo much longer but in many ways I remember lying on that trolley listening to the nurses like it was yesterday. Anyway, the year is drawing to a close…I decided to pretty up my blog with a flowery theme for a change….to reflect the fact that when Reggie is a year old it will be Spring 2012.

How is the stiff one? Well, he is still stiff. This is a good thing. Failure of hardware or fusion has not happened and probably won’t now unless I drop a 10kg weight on it or smash it into a wall at pace. I am planning on neither option just at the moment. I cannot feel the screws when I walk, I don’t really think of the fact that the joint is stiff when I am in a shoe. In bare feet I still find it strange, as the foot doesn’t feel “right” on the floor but I am not sure how much of that is CRPS and how much is the different mechanics of the foot itself. Certainly in shoes it feels pretty normal to walk, but I have noticed on a very fast walk if I push off hard I feel it under the toe more. i guess because it doesn’t flex any more.

In terms of what troubles me it is still the CRPS. I think it is still abating at a slow rate…very slow…..I am not using the DMSO on it any more as it didn’t seem to be adding anything else after its initial success on the swelling. I am not really swollen that much now, apart from lumps of swelling on the “knuckle” that come and go and a ring of swelling that remains on the big toe but which fluctuates. The DMSO is quite strong and I decided that Epsom Salts would provide a similar effect with far less nastiness. I regularly use an old sock filled with Epsom salts and stick my foot into it. Soothing. I continue to take the Lyrica but hope to start reducing in the new year. I find that very often the foot feels pretty normal and good – but then I will get hot from walking around shops or something and it will change colour, go red, go hot and hurt. This frustrates me as I can’t live my life keeping my foot cool but not cold! I think that bizarrely it has been better with the onset of cold weather; flies in the face of CRPS theory that people do better in warmer climates. I shan’t be relocating to hotter climes. Reggie would probably explode.

I continue to work hard on fitness and have commenced a program with a new personal trainer at my gym. This has been really positive for me, as he has looked at my diet and I am now on a predominantly high protein and low carb regime which is also a good anti inflammatory technique. Things like citrus fruits, acidic food, refined sugars etc are pretty much banned. I do indulge in some odd treats (life is too short to live on eggs, fish and veg….) but I’ve seen a 2% reduction in body fat from starting it about 3 weeks ago and definitely have seen some good spells with the foot. Combined with this I have started reflexology and had my first session last week. It was awesome and I am looking forward to my second session. Reggie loved it! The HBOT is on hold, as they have not come back to me and to be honest I’ll spend the cash it would have cost on training and some foot pampering. In addition to the positive effect on the foot, the training is also working on my leg strength and functional knee training so I am feeling like I am making gains. I have established how weak my opped leg got, even from that short space of crutches and less activity. Its tough working on it as my balance is poor due to the fact the big toe isn’t clawing on like it would with full bend. I am really trying to work on balance and my trainer is getting adept at standing next to me and pushing me like a weeble as I waver over from side to side wielding a dumbbell and squeaking loudly.

I feel pretty positive. The CRPS hasn’t gone but it hasn’t spread and it hasn’t got worse. If I had to live with this level of it, could I? yes, probably. Do I want to? No, I want it to keep abating and eventually to not have a dumb ass foot with a mind of its own. Actually, it isn’t now the foot; the CRPS resides firmly in the outer side of my big toe, along the scar line and on the knuckle section and in the 3 toes next to my big toe. Nowhere else. This is good as it was in the whole forefoot. Long may the abating continue until it falls out of my (shiny pink varnished) toenails. Do I believe it will go? Yes. At 12 months on I expect to be posting that the foot is happy. That I am pleased I had the surgery and the foot doesn’t dominate my thoughts a lot of the day.

Bring it on Reggie. You won’t beat me!

Outside of feet, the new kitten is no longer a kitten. He is MASSIVE. A giant kitten with a giant personality. He is simply adorable but totally bonkers. As the last cat into the household he asserted himself clearly at the top of the pecking order. Best place on sofa, best treats, most cuddles, fed first….he has it sussed. He is a prolific hunter (and scoffer) of all things mouse/bird/shrew. I am used to picking up entrails and organs, but thankfully have not yet stuck Reggie into a pile of mouse guts. Yet. If I forget my lenses or specs that could happen. Yuck. Will make the DMSO appear like a soft option.

I’ll try to get a photo of the foot up later on. Just for reference purposes of course. Not because I love the lack of onion.

Thanks for reading folks, and I’ll keep you posted!

 

Long overdue!

Goodness I have been extremely remiss with updating this blog. I guess that in some ways that is a good thing – perhaps normal life is starting to resume? I shall try to summarise the past few weeks of progress in a succinct and clear way; this means I am about to be typing for about 3 hours and poor blog followers will have to wade through pages of self-indulgent observations about my toe, the cats and cake. I think that after this update I shall be retiring from this blog. It has served the purpose of documenting a journey towards a more functional foot. That journey isn’t over but in honesty, the fusion has been a huge success. So, I shall probably create a dynamic and fascinating new blog…I just haven’t quite settled on what it will contain yet but rest assured Reggie-lovers, he will be featured in it!

So, as I said…the fusion has been a success. In shoes of most kinds I am not even aware of the fused toe joint. It does not affect things like push ups, planks, stairs, walking briskly. In bare feet it isn’t quite the same as because I have a tendency to hyper extend the top toe joint I find it often seems to “stick up” and feel weird. If I consciously scrunch that joint down then it feels OK but that takes mind monitoring. I find I often seem to roll on to the outside of my foot when I walk barefoot or in a sock and I need to work on this. Practice will make perfect. But I managed to wear wedge shoes for work yesterday – slip on black leather with about 1 inch and a quarter heel so nothing wild but the limit of Reggie’s angle of dangle. Felt surprisingly OK and made me realise I could not have managed those before the fusion. I simply could not wear any level of heel without severe pain.

But what of the CRIPS I hear you say? It is still there. I saw Dougal last week for the first time in 3 months. He was “chuffed” with the appearance of Reggie. In fact his follow-up letter appears to describe someone else’s foot as he calls it relatively normal with no colour change, temperature change or swelling. I think had he seen it yesterday after driving home 155 miles and a day in the previously described shoes he may have amended his thoughts somewhat. However, Reggie has clearly progressed since Dougal last checked him out. The swelling has reduced generally, which is good but makes the bits that are still red and swollen even more noticeable. There is a lump of swelling on the joint of the top section, that is really weird and grows when he gets stressed. Additionally I still have a red “lump” on the spot where the onion would have been. It feels really bony and strange when I rub it but I think it is reducing – slowly.

Overall I was feeling that I was stuck and progress was not really happening. I had experienced a few flare ups where things had really got to me. I was worried that things were progressing in a bad way – was the CRIPS starting to get a hold on my whole foot?? But Dougal was actually very positive. He did agree that this is a chronic condition and clearly it needs managing. However he feels that even with that caveat he sees real progress in how I am doing. He highlighted the fact that I have now returned to working 2-3 days a week and am coping with travelling across the UK. I am at the gym 4-5 times a week. I am driving with no issues and wearing a range of shoes. Whilst I am having flare ups he reminded me that these are less frequent and even though they are intense they abate more rapidly. So, I am to carry on with the medication and see him in 3 months. At that stage I may be able to start reducing the drugs which would be marvellous. Lyrica makes me feel bloated and I am sure I have gained weight despite exercising like a demon – I just feel podgy, but that could be the cakes!

In terms of “treating” the CRIPS I have been using the DMSO for a while now. I ordered a slightly weaker solution that has a kind of moisturizer in it as the first 70% stuff was eating my skin to bits. I don’t know quite how much the stuff does but it certainly hasn’t done any harm so I shall carry on with it twice a day. I also found that Epsom salts stuck in a damp sock with another warm damp sock over the top is blissful. Using this logic I bought a tub of cheap magnesium sulfate paste from Boots and slather that on to Reggie’s red bits three times a day too. Seems to help! There is also a big link between keeping the foot cool but not cold, and when it does overheat getting it cooled off rapidly (using the sock helps). Heat in general seems to make things bad, and I have a pattern where I find I get hot (eg in a hot place, room etc) and then the foot starts up…then I feel weak….then I feel sick….then I end up having to go to sleep as soon as I can!

I finally had a reply regarding the HBOT treatment too. I may start this in the near future but they are recommending a lot of sessions, which I expected, but at a slightly higher cost than I had anticipated. However I have read great things about HBOT and given that progress appears to be going in the right direction it could be another push towards normality. I think I like the concept because the foot always feels great at the gym when I am really working hard. This is when oxygen is being pushed around rapidly and the HBOT kind of works on the same principle of flooding the tissues with oxygen to create repair and renewal. I am convinced that repairing the tissues works on the signals – if eventually the tissues are normal then the faulty signals could well stop happening. That is my logic and I am sticking to it.

So overall life continues with the CRIPS still there. I am trying SO hard not to let it dominate my life but when it flares this is tricky. I find my mood is closely linked to how the foot feels and when it gets painful and I feel so exhausted I sometimes do get angry or upset. Kudos to my long-suffering husband for always being there and listening and never moaning. I am sick to death of the bloody foot so I can only imagine he would happily chop it off at times. The cats continue to entertain us. Lucas has now been “de-balled” and we are waiting for a calm, relaxed kitten to appear. So far the evidence of the disembowelled pigeon in the hall, destroyed toilet rolls in all the bathrooms, and frequent spats with the other two mogs indicates the testosterone levels are still raging….One day perhaps….when he is about 15! Poor Boris has become a little of a remote living cat, as he really finds Lucas hard to deal with. Must be a bloke thing, but they definitely have “issues”. Lottie merely attacks Lucas and he backs off – she is a stroppy madam at times. However the other night we had a Boris on one end of the sofa, me next to him, Lucas next to me, and then hubby at the end. Perhaps harmony may be more forthcoming in the colder months.

We’ve also booked the first proper holiday for Reggie. He is off to a cliff side former sardine factory site in Cornwall. I hope it won’t smell of fish. We are going over Christmas, just the two of us for lots of good food, fresh air and relaxation. I am really looking forwards to it. No hassle with travelling to families, do exactly what we want, no Boxing Day sales adverts and rubbish and crowds, just a change of scene and a lovely place to stay.

So, life is slowly returning. Sometimes I even think that the CRIPS will not be around for always and it will be a distant memory. I hang on to the comments that Dougal made and also the fact it hasn’t turned into the hideous thing it could have done had it not been picked up. OK, it might get out of control without the drugs. Who knows, which is why I am staying on them. But I shall keep doing what I am doing and hope that by 12 month goal I have a great foot. And tomorrow I am off to a falconry experience – borne out of the fab visit I made to a centre the weekend prior to the choppage on the foot. This is a more local centre and I get to actually tamper with some birds of prey! Bring on those talons!

Hugs to all. I shall take a picture of the foot in the daylight tomorrow for the sake of recording evidence.

Lottie 🙂

This entry was posted on September 23, 2011. 1 Comment

Just the toe of us..

Morning all. It is 7.42 on a damp Sunday morning as I write this. I have been awake since 5.30 a.m. due to Lottie undertaking football drills or should that be mouse-ball drills around the bedroom and landing with a dishevelled and terrified rodent. It finally keeled over at about 7.11 when I decided I might as well get up as Lottie was clearly now hungry. All that fitness training makes a girl starving. The mouse wasn’t quite as peckish apart from perhaps desiring an oxygen tent or a CPR intervention. It is now resting quietly in a shoe box. (aka dead as a ……..mouse).

So with Earl Grey on the go and a husband still soundly asleep I thought I should update my poor neglected blog. Let me start away from the toe for a change. The good news is that there is some harmony slowly returning to the cat household. Whilst I can’t say that the grown ups have wheeled out the welcome wagon and embraced the new arrival with open paws they are certainly mellowing. They now all play outside quite happily, and have started to accept eating in the same room and walking past each other without a major fur flying episode. Lucas still needs to reign in the tendency he has to chase after Boris, show him his tackle or try to mount Lottie but he is getting there. It is helping that when out, Lucas is developing his own areas of “interest” so he has some trees he like to run up, hang off and fall out of. He has a few favourite “holes” in the grass opposite and now ventures further afield (literally) in his bid to experience all of countryside life. I am cautiously optimistic that eventually all will settle down. Thank you to everyone who helped in the process with practical tips and words of encouragement! It would be terribly sad to give up on the little monkey and he does seem to love living here. My little black ninja is definitely a softie under that sleek black exterior and sharp teeth!

On to the foot….ahhhhhhh the foot. Sometimes I have a dream that I have a normal foot. Then I wake up! But as Kay pointed out in her comment on my past blog entry there is so much to appreciate in life and sometimes you have to just realise that you’re not that badly off in the grand scheme of things. Doesn’t stop the down days though and the feeling that just for once you’d like to not feel like you’re walking on a sensitive mound of eggshells under some of your toes. I can only say that Reggie has been up and down. I think I have been having a few more down periods with him than up and he has started to experience some really deep, shooting type pains. I cannot get the red swollen sphere over the knuckle of the former joint to abate and when it starts throbbing the rest of the toes follow in quick succession. It is hard to establish what is CRPS and what is the effect of surgery. Given that it seems much worse when it rains I think there is probably some link to the hardware in there and ongoing inflammation. That is the problem with CRPS; there may be perfectly normal residual inflammation after the extensive work done on the bones. But CRPS senses this, reacts and creates MORE. Agh!

I have been doing some interesting research on the net into this whole business. When I was first diagnosed I read a lot of “support” group threads. They were terrifying. People with “whole body CRPS” and the inability to walk. People on morphine, in wheelchairs and with spinal cord stimulators. OMG. So I made a deal with myself to leave such sites well alone. However I decided to try to find some positive stories and also look at some research into why it happens and how it might be helped outside of the conventional nerve blocks and so on. No way is anyone stabbing my spine with a large needle thank you. I may not ever have odds in my favour for a good thing such as a lottery win but given my propensity for medical complications I would be that millionth percentage that ends up paralysed. So, thanks but no thanks Mr Stabby Needle man.

Which brings me to non surgical interventions. The first one is HBOT. This may sound like a Star Wars robot or some diverse beauty treatment but is in fact hyperbaric oxygen treatment. Basically you go sit in a decompression chamber akin to that which divers use and get taken to different “depths” over a series of sessions. Unfortunately I don’t think you get the fish to photograph or the warm lapping waters of the Maldives. The theory is that by doing this, oxygen floods the tissues and allows repair, recovery and reduction of inflammation. Little formal evidence exists to support it with CRPS but one study in America showed positive results and remission of symptoms in around 40% of CRPS people having multiple sessions. That is better stats than nerve blocks! You need a LOT to have an effect, upwards of 20 sessions of around 90 minutes each. In the UK chambers exist at several multiple sclerosis charity support centres as it has been shown to be effective in managing the symptoms of MS. There is one relatively close to me and I am in contact with them to establish if they feel they can help. Watch this space (and watch my ears pop!!)

Secondly I have found a few anecdotal web reports of people who have had CRPS and who have got it under control. In fact one individual refuses to discuss control or remission and says it can be got rid of. He says you don’t remiss a broken leg do you, and then if you break it again say it has come out of remission? I can kind of see his logic and it is a positive way to construct recovery.

What do these anecdotes discuss then? Do they advocate burning clumps of hemp over poor Reggie whilst chanting incantations from Peru and only eating mung beans and guinea pig? Do they recommend buying pink Crocs, soaking poor Reggie in reconstituted snails and porcini every night and rubbing him with cabbage leaves? No. Although I have found reports that cabbage leaves are actually good as natural anti inflammatories so perhaps I will craft him a winter sock out of a trend setting mix of red and green leaves. And the pink Crocs….well, if you’re going to wear them they should be pink….

No, these reports talk about a variety of options. Two of the key ones seem to be using DMSO  and NAC. Yet again my acronyms run away with me. When I read these I thought I was on some form of “Introduction to computer programming for the surgically challenged”. DMSO is actually Dimethyl sulfoxide, an organosulfur compound with the formula (CH3)2SO. There you go. Its used as an industrial paint stripper. What is suggested you do with the appealing DMSO? Rub it into your CRPS affected bits. OK. Well, probably worth a go and unless you’re shoving it on neat it is unlikely to burn your skin off. Immediately. You can’t buy DMSO in Boots. Instead you can get it online and it arrives cellophane wrapped and with the disclaimer “This is not intended for medical use” despite being promoted on the website as a great anti inflammatory and helpful to a range of conditions. I guess they don’t want to be sued if your limb drops off or spontaneously catches fire or looks like a failed Homebase advert. Anyway I got some, and I on Day 3 of application. So far Reggie hasn’t dropped off. I’ll keep you posted.

Reports also discuss NAC. This is N-Acetyl Cystein. This is an anti-ageing nutrient and helps to detoxify the system. N-aceytl cysteine supports the function of the liver and protects against environmental pollutants. This is one of the few amino acids to contain sulphur, which helps in the production of collagen and promotes proper skin elasticity and texture of the skin. It has nothing to do with Michelangelo and a paint brush. Why do all roads seem to lead back to painting? Oh well, at least I can help him out with his brush cleaning at the end of the day should he need it. NAC is on order from Holland and Barrett. They don’t seem to actually have it in store around here which is highly helpful.

In addition to my acronym filled treatment plan I shall be purchasing some Epsom Salts as they are also indicated as beneficial to the CRPS limb either in the bath or as a kind of damp “wrap” that you stick your foot in for 45 minutes or so. Vitamin C is also indicated and of course that never does nay harm to boost in your system. Finally magnesium citrate is mentioned but I don’t want to overload poor Reggie with all these things so I will stick to the two key recommendations and see what happens. Short of my skin falling off I don’t think I can do much damage with trying some alternative methods. In honesty even industrial pain stripper is probably way less toxic than the combination of prescription medications that rattle around in my handbag.

On that note I must say I bought myself a handy little daily pill organiser from Boots. Since my memory has turned into that of a goldfish I found I couldn’t recall taking my tablets. Not helpful. So, I now fill my little pods with my pills and have a structured way of seeing what I have taken and when. Perfect you may think. Yep, it would work really well if I a) remembered to actually look in the organiser and b) take it out with me. Is it disturbing that my job involves assessing individuals with cognitive deficits?! Honestly I am enjoying being back at work a few days a month but the brain power and concentration it takes to get there, be alert and on the ball with them for 3-4 hours and get home usually leaves my brain and body feeling like it has completed a combination challenge of Ironwoman and the Krypton Factor. Perhaps I am getting old.

So, I shall sign off. One of the other suggestions was removing caffeine. The jury is out on whether I can do that. I do LIKE my coffee. I have more or less removed alcohol apart from a beer or glass of wine at the weekend. Also removing Diet Coke was another suggestion, even the caffeine free variant as the aspartame is toxic. Blimey, taking away my Starbucks and Diet Coke might just render me a miserable old hag. So, I shall go and get the bean to cup machine fired up and work on my HBOT, DMSO and NAC regime instead for the time being….

TTFN. LOL. x

PS For those craving more information (Danger Kay!!) some links below…

http://en.wikipedia.org/wiki/Acetylcysteine

http://en.wikipedia.org/wiki/Dimethyl_sulfoxide

http://www.dmso.org/articles/information/muir.htm

http://www.rsdalert.co.uk/treatments/HBOT.htm

http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/779

Oh and finally……just to show how BIG the kittie is getting!

Growing cat.....

Toe toe, toe the boat, gently down the stream…

I have been thinking about this blog and where it can go in the future….clearly the fused one is doing OK and the main issue now is managing the CRPS and trying to get it into remission. As far as the fusion goes, well, if I hadn’t got the danged CRPS I’d probably be wrapping up some of the posts on this blog and saying that I’d update every month or so. However. Life is, as Forrest Gump says, like a box of chocolates and I unfortunately picked that strange, furry coated one that no one else ever wants (Turkish Delight or Orange Creme usually….). CRPS – aka the chocolate in the box that is left 6 months after you’ve opened it and that even your mad Auntie doesn’t want adhering itself to her dentures.

Oh well. I stick to my optimistic outlook that the orange creme selection will abate and within a few months I will be surrounded by the orthopaedic equivalent of Alpini bars, Green and Black’s Maya Gold and some good ole Dairy Milk Fruit and Nut thrown in for good measure. Yes, I will be surrounded by a foot that feels like, well, feels like….a foot! That would be a novelty indeed!

How is Reggie and the foot? Generally not too bad. The usual round of ups and downs. He is definitely looking less swollen on the toe and foot. I still have a “dome” of swelling right down deep on the knuckle of what would have been the joint. It is like deep bone swelling and I may email Chopper and ask if that is normal. It seems to be right where the bunion was and I guess is over the main part of the work and screws inside. It doesn’t hurt as such; I can rub it really hard but it seems to be where the CRPS starts up along with the toe sensations. So, is it CRPS or normal post surgical sensations? Who can say. Not sure even a surgeon will be able to, but I may ask the question anyway. Some days the foot or rather the toes just seem to hurt. It seems that even walking and the toes moving against each other is uncomfortable and today has been one of those days. I am struggling to pace activity and want to be out there doing as much as I used to think I could do but I know that isn’t a good way to beat this thing into remission.

The good news is that I am working again. I have now seen three clients including one that lived some 90 miles away so I did the assessment and the driving. It is nice to be semi back into the normal world and at least the distraction of work takes my mind off the foot to some degree. I am also maintaining my gym workouts and enjoying them again although of course, moderation is needed for both the foot and the cranky knees. Honestly, it is like being 82 not 42 at times. I had to laugh last week when I sat opposite a lovely client who had surgery for a brain aneurysm last year and experienced altered nerve sensations to her left arm..

Client “Of course, my arm has been tender, it kind of feels like really painful even when someone just strokes it and goes pink”

Me “Do you find it gets cold easily?”

Client “goodness yes, I am always in a fleece….”

Me “And any changes in sweating?”

Client “Yep, it sweats more than the other arm…”

Cue Reggie. I restrained myself from whacking him out on the table and discussing my own ailments (not highly regarded by the HPC) but it made me smile that I now have true empathy with clients and in fact my list of medications outstrips many of theirs. Slightly saddened by that last fact but I am now the proud owner of an NHS pre paid card. Whoohoo me, next step Mecca Bingo.

So, that brings me back to where this blog can go. Seeing as I started it to hopefully inform and inspire people contemplating or recovering from onion surgery or similar then perhaps the next entry can be something along the lines of things I wish I had known and things I could suggest to such individuals. Right down to making sure you have enough DVD content to keep you occupied the first two weeks, to not picking at your scabs when the incision heals, to deciding whether to do the “chop” or not. I shall try to keep the CRPS angle out of that, but it is hard as in fact anyone can develop it; and I never thought I would. But would I rather have my foot with a giant spur, pain on walking all the time and no chance of improvement? 90% No 10% Yes when it won’t stop hurting….

There is my conclusion. I shall develop my list of top tips and that will form my next entry. For now it is tramadol time and possibly a small red wine. You can’t beat prescription painkillers and alcohol. (Well, you probably can and probably shouldn’t but hey, life is short…)

In the interim I want to mention someone’s writing that has inspired me. We were out at lunch a fortnight ago and I was flicking through The Times Saturday magazine whilst we chilled out. I came across one of the most emotive, honestly written pieces of work I have encountered. Melanie Reid is a Times journalist who broke her neck and back last year in a riding accident. She writes “Spinal Column”; an update on her progress, life, rehabilitation and observations of the world now she is coming to terms with paralysis in both legs and dramatic restrictions to her arms and hand function. She is a witty, warm, observant writer and the kind of woman I immediately felt I wanted to sit down with and open a bottle of Rioja. I cannot contemplate life in the world she now finds herself in and I guess none of us ever think that any form of disability will happen to us.  She was someone who hiked, rode, ran, abseiled and who has now spent 12 months learning to try and walk again in a rehab facility and is now living at home in a world that we cannot even guess at…..if you get chance to buy The Times at the weekend, read her work. Alternatively some of her articles are on the Times archive for free and her writings have also been copied to a spinal injury forum..I won’t link that as clearly they are pasting from the Times but do a google and you’ll quickly find her work.

This is her first column entry after her accident. This woman inspires me and I can only dream of being able to write as she does, and show such bravery. Take care all.

http://www.timesonline.co.uk/tol/comment/columnists/melanie_reid/article7106702.ece

And another example of wonderful writing:

http://www.pressawards.org.uk/modules/entries/images/entries-01370-01538.pdf

This entry was posted on August 8, 2011. 1 Comment