Flare ups…

If you have CRPS, this term is something which you will be all too familiar with. For those who are not so familiar, it is where your ordinary pain level escalates to the unbearable! For me, using the ordinary pain scale of 0 being no pain and 10 being the worst ever, I live at a permanent 7-8/10. When I have a flare this escalates to 10++. Now, you may wonder how you can get worse than 10, the worst ever. Well, this is simple. Just when you think you’ve reached the worse pain you’ve ever had, crps has a way of letting you know that you were wrong, and there is always more to be suffered!

So that is what a flare up is. Now the worst part of it for me is the fact that it dictates what I can and can’t do. When it’s bad, I can’t do anything. I basically roll about crying, and try my best to do my mindfulness. When it’s a semi flare, so basically a 9 or 10 on occasion. It fluctuates between the 2, this is the most annoying. I get these alot. I’m having one right now. Today I was hoping to go for a wheel, write more of my book and had a few chores to do. But instead all I’m capable of is laying on the sofa, with stumpey covered in heat packs. I feel totally useless, and hate the fact that it is dictating what I am aloud to do today! There is no way I can write my book, as it is so important that I get it right. It is set in the victorian era, and so requires alot of research, which is something that is rather difficult when you are such a high level of pain.

I hate this condition dictating my life. Because I am recovering from the TMR surgery, I am having more flares than usual. While the nerves are finding somewhere to go, and causing a ton of pain in the process, they set off the crps. I was told this before the surgery, and was told it could last for 6-12 months…Well I’m now on month 3…I’m so hoping for the 6 minimum, but with my luck, it will likely be the 12. I’m not feeling sorry for myself, just speaking of reality.

Reality!!

So what can be done in these situations? It is so easy to let them drag you into the pits of despair, and believe me, I’ve been there all to often. Every time, I wonder when it will end, and worry of them beginning. There’s nothing more annoying than having to tell a friend who wants to see you, for the 20th time, that your going to have to cancel! I have lost so many friends because of my flares. But what I realised was they were not very good friends to begin with, or they would still be around, and be understanding! Still doesn’t stop it hurting at the time! So now, I try to accept the situation. I lay on the sofa, and try as best as I can to relax, and wait for the flare to end. Then on the days when I can, I try my damndest to use them as fully as I can. I make sure I exercise, weather it be swimming, handcycling, wheeling or going to the gym. I write as much as I can, and I try to do some household stuff. I feel useless if I don’t. I love a tidy and clean house!

So basically what I’m trying to say is, don’t beet yourself up for not making appointments or meetings with friends. If they don’t understand, they are not true friends! Remember if your having a flare, you need to rest. So take the advantage to catch up on a box set or watch some movies. Try as best as you can to be kind to yourself. They are part of the condition, and although they are the worst part, it doesn’t mean they have to take over who you are. You are strong, and you know they will end.

I hope your having a good pain day 😁

20 days and counting …

As you may have gathered, I’m still in hospital! I mistakenly thought I’d be in and out within 5 days. I was pre-warned that it could take a couple of weeks, or possibly longer, but I thought, I’m tough, I’ve been through lots already, I have a very high tolerance to pain… None of those things make any difference to any hospital stay. It is impossible to predict how you will recover, or how long it will take. I can say, that previous to this experience, I was certain that I had reached the very hight of my pain level. That pain couldn’t possibly be worse that CRPS flares with neuromas… I was wrong. CRPS flares, with surgery is far worse. I was warned, so it wasn’t lime I went into this not knowing that things would be tough. But usual me… I shrugged it off, and thought to myself ‘oh well, what’s a little more pain?’ Well, I can tell you… a lot!!! I’m feeling battered, bruised, sore, sick, tired, and missing my babies. All that said, however, things are steadily improving, and the care and treatment I have received here at the QVH hospital in East Grinstead has been just incredible. All of the staff are just to kind, and caring. They have been there for me through night and day. I know you must be thinking, well thats what is supposed to happen in hospital, well let me say… it doesn’t always happen. After being a Nirse myself for 14 years, I’ve seen a substantial lack in compassion within the field. Yet here, they all have oodles of it. They are warm, and friendly. They make me cups of tea in the night when I’m awake in pain. My surgeon Tania Cubison, the genius, always comes by every morning to check on me. The pain nurses have been in every day, trying everything they can to see me through the tough times. The anaesthetists have been to see me every morning and evening to administer boluses into the nerve catheter in my leg. I am honestly, truly amazed.

Battered and bruised!!

So, we have lowered my intravenous pain medications now, and are lowering the local anaesthetic meds going into the nerve catheter in my leg. The pain is rather bad a couple of times a day, which is when the anaesthetists step in. But we’re making improvements in that respect as well. The plan is that the nerve catheter needs to come out by the weekend, as its been in too long by that stage, and could increase risk of infection, which I definitely do not need. So watch this space. Hopefully I will be home by early next week, if not sooner 🤞

Pin cushion!! 🤣

TMR progress…

I’ve now been in hospital 9 days. 8 days post op. Had my TMR (Targeted Muscle Reinnervation) surgery on Thursday last week. Had a bit of a rocky ride since then. My pain levels sky rocketed and not much seemed to bring it down, other than visits from an anaesthetist to put a bolus (big volume) of local anaesthetic into the catheter (tube) which was placed during surgery to administer constant local anaesthetic into my leg. We now think that the catheter was rubbing directly on a nerve, so causing more pain. So yesterday, the Dr’s had a pow-wow and decided to take the catheter out. The hope being that the pain would get better. It did with movement, but not anything else, intact it sky rocketed further. I spent the day screaming in pain. Never felt anything so bad. My CRPS was flaring, and my leg was killing, so it was back to theatre to have a new nerve catheter placed.

Pre and post op

Now, the next morning, there is a significant improvement. My pain is back to its normal level. Which is amazing. Along with the pain before, the Dr’s tried a few new medicines. Wish we hadn’t, as they all seemed to cause the same reaction… Sudden Tachycardia (high heart rate over 100 bpm) and light headedness. One of them dropped my BP as well, and another caused extreme shaking all over my body. This happened 6 times in total. Rather scary. So now, today, I will be happy just to have a day with less pain, and no complications.

Pin cushion!

So now I’m still in East Grinstead hospital. I have to say, the staff are all absolutely amazing. Completely different to any other hospital stay I’ve had. They actually believe you when you say that your in pain. They don’t try to kick you out just because they are convinced you should be going home now! Unlike another hospital. Who decided that after a week, I shouldn’t be in as much pain as I was, and started to get quite impatient with me for being in pain!

Here is what hospital treatment should be like. Where nurses actually care, and no one makes you feel like your a burden. I’d actually consider moving here, just for better treatment! So, fingers and toes crossed for the next few days, and with no more blips, hopefully I will start to recover nicely.

It’s a Neuroma!!!

Finally, after two years of saying that I have pain, other than my crps in my stump, I finally had an MRI. The results showed a neuroma and a second area of thickening around my stump. Finally, after being rebuffed, ignored, made to feel awful… I was right. So, I recieved a call from Bristol to tell me the news. They said that there was a few treatments, but we’re still reluctant to do surgery or even touch it because of the CRPS! This is despite the fact that it would seem that the Neuroma(s) are setting of my CRPS. People are so focused on not setting off the crps, that they are prioritising it over long term treatment, basically confiding me to my wheelchair for life! Luckily for me, I had my appointment in East Grinstead, and the amazing team there see things differently. They believe in treatment, with the realisation that my crps may get worse, but they inform and let me decide.

During my visit, I had an ultrasound, which was thoroughly explained, and had the consultant present. I then saw my consultant, Dr Tania Cubison. She was amazing. She explained everything. I saw videos, photos, and was told the actual facts and statistics of probability of recovery. I felt fully informed, which I have to say, I’ve never had before. I don’t know if it’s because I’m a nurse, or weather others have had such treatment, but at my local hospital, I’ve never had as good a treatment as I did at East Grinstead. After I saw my Dr, I then saw a anaesthetist, who was again very thorough, and explained everything. Now this is a big thing for me, as when I went in for my amputation, I was taken into hospital 4 days before the surgery to have a block by the pain Dr, who didn’t show up to do it! As a possible consequence of this, my CRPS came back! The anaesthetist resured me that he will show up, and couldn’t believe that someone, or a service would be so unprofessional. He plans to put in a block the day before the surgery, and then they will place two other blocks when I’m unconscious. He stressed the importance of doing this so that they can ensure it works, and doing it right before having surgery, doesn’t give you a gauge of weather it is placed correctly, which is what happened to me!

Above is a picture of a neuroma.

So then I was off to see a pre op nurse. They were also very nice, and seemed quite knowledgeable. The were very thorough. I have never had bloods taken before in a pre op assessment either. I have also never been made to feel so welcome. I have to say, I am very glad I will be going there for my surgery. The thought of going to the Roayl Devon and Exeter again, where they’ve ignored me, treated me like a sub human, and neglected me, wasn’t very favourable. So this should be happening in August, we think. The plan is to do TMR surgery on three of my nerves. There will be an approximately 8-10 inch scar on the back of my leg. I have been told to expect a hospital stay of 3 days to 2 weeks, and their goal is to ensure my pain is under control before they kick me out. Another refreshing change…

We have a plan… I couldn’t be more relieved, and grateful to my friend Maggie, who without her referring me to this amazing specialist Doctor, I would not be in this fortunate position. It is amazing that I’ve had to go so far away, just to be taken seriously, and to have treatment. It angers me, as I’ve worked at the RD&E for almost half of my life, including doing my nurse training there. I’ve been a registered nurse there for 14 years. Yet I received such diabolical neglect, that they were just going to leave me in pain for the rest of my life. I still have not received an appointment with the pain team, despite 2 years of urgent referrals being sent. This is how poor the treatment has been for me… having none! Anyone with a Neuroma will tell you, it is excruciating, as is CRPS, and one sets off the other.

All I can do now, is wait for the date. I couldn’t be happier with East Grinstead. Just wonderful.