As I explained in my
last blog, I am currently waiting to have the Spinal Cord Stimulation operation,
but due to the open sore on my leg, I have to wait for it to heal. I have still
got one sore that will not heal. I am currently on long term antibiotics and I
have my sore constantly dressed. These dressings are incredibly painful because
of the hypersensitivity caused by the CRPS. I recently had to reduce the amount
of dressings due to them becoming a problem when my leg swells. I have tried so
many dressings and have only found one that is the most bearable and which my
leg does not react to, and this dressing is called Mepilex. I have had this
sore for nearly 3 years and I find it really frustrating that there is a
treatment that may help but I cannot have it until my sore heals. Doctors have explained that dressings they
would normally use on non-healing wounds are not really an option because of
the pain they would cause, also the doctors have mentioned using creams on
non-healing sores, and this too, isn’t possible because my leg reacts to any
creams. It goes bright red and burns really intensely which causes a lot more
pain and results in my whole body tensing up.
I have recently just
been back to the dermatologist and re-questioned him about anything they could
try that they haven’t already. I understand that I am a very complex case but
need to find something to help my sore heel so that I can have the Spinal Cord
Stimulator operation, which I have been waiting for. My dermatologist explained
that we are in a difficult situation with finding something to help, however he
re-suggested having a skin graft. When I first went to the hospital about
getting help to get my sore heeled, it was to see a plastic surgeon, but at the
time he didn’t want to do a skin graft. Now the dermatologist is sending me
back to see the plastic surgeon to see if this could help and whether he would
try it. I am willing to go to see the plastic surgeon but want to know all the
facts and everything about the skin graft before I would go ahead with it.
I started going to
hydrotherapy a few months ago to see if it would help me to get some mobility
back. I found it extremely painful and it caused me a lot more suffering after
the sessions; however I found that I could move more in water than I could on
land. I attended about 7 sessions and my progress started to slip away and it
only seemed to be causing me more pain.t. So I, my mum and my hydro therapist
came to the decision of taking a break from it for now and maybe go again once
I have had the Spinal Cord stimulator, because I think then it will be a great
help and I would gain a lot from it.
Sleep deprivation is
a major problem at the moment, I only manage to get 30 minutes – 1 hour sleep
per night, the rest of the night I spend resting as I do find resting helps me
to feel less tired. Lack of sleep is due to the amount of pain I suffer from
and unfortunately there is no pain relief that helps control my main pain
levels, because I need the stronger medication but this makes me really poorly.
Over the years of
having CRPS, I have found ways to help cope with the pain and how the pain can
make me feel from day to day. I find listening to music extremely helpful;
especially listening to JLS because they are my favourite band. Also I have set
up an awareness page on twitter (@crpsawareness), my aim is to raise more
awareness and to help those that suffer with CRPS too. I find it helpful
because I feel that I am doing something positive out of a negative. By talking
to people who also suffer with CRPS through my awareness page makes me realise
I am not alone with this disease and I find it helpful talking to them. The main thing that helps me keep strong is my
family and friends, they are amazing and are there for me and support me
through everything. My mum is the one who comes to every hospital appointment
with me and changes my dressings on my leg, I realise this can’t be easy for
her or any of my family to go through, it’s not just me going through all this,
it effects my family as well.
Good morning Jessica, (it's morning her in California, USA)
ReplyDeleteI just read your entire blog. I'd tweeted you last night and you sent me your link.
I am so impressed with all that you've accomplished while having to live with CRPS. You wrote a doctor was surprised that you were still in school. You have the same thought process my daughter does ~ it's going to hurt no matter where you are. This is what my daughter says, as long as she's not having a flare-up.
We just learned about this horrible disorder/disease a few months ago. Since April 2012 my daughter's pain has gone from one spot to a much greater area on her body. I have to wonder if it will stop spreading at all.
At this time the anti-seizure medicine allows my daughter to sleep. She is very lucky. I feel so bad for you that you can only sleep 1 hour per night. I can't understand how you do it. Sometimes, like last night, the pain in my daughter's shoulder hurt so much she woke up. Eventually she was able to get back to sleep. It makes me concerned because it has happened a couple of times this week. I pray it doesn't increase, too.
The scars you wrote about are from the brace you wore, right? You had something go through your leg to the bone, it seems. I would think there was a problem with the healing process inside your leg, the tissue. It seems that would be why it was bleeding. Of course my speculation doesn't mean anything. I'm just a regular person, not a doctor. When I first read about your scars opening (I didn't know about the bracing) I couldn't understand how that could happen, but after reading about the way you had the brace attached, I understood. Not why it's not healing, but how deep and extensive your scar's injury was years before.
My heart breaks for you, Jessica. Reading, in your blog, how much you've been through and now having to wait for your scars to heal before getting the spinal cord stimulator is also heart breaking. I truly hope your scars heal soon and you're able to get what ever procedure that can help you. You are a strong girl. I can tell by what you've written. I am so impressed with you determination to not let the CRPS rule your life. I was absolutely amazed at what you have accomplished! Congratulations on your well earned grades!
I am glad you have a strong support system. Being the mother of a daughter with CRPS, I know that being there for her is really the only thing I can do when she's suffering. Nothing takes the pain away, and that is so hard to bare. But... I will do everything and anything for my daughter no matter the time of day or night. I just wish I could do more.
I will look for your twitter feed. If you are interested in my daughter's story, I've put some of it up at www.amberhurts.com . It only been 9 months for her, so there's not much. I tweet about her at @amberhurts and have a facebook group, too. I think it helps me to have these because it's so frustrating not being able to do anything about it.
I will come back to this blog to see how you are progressing. You are very good at writing. The way your blog is written clearly communicates what you've been through and how you suffer. Good job!
Sorry for such a long post,
Amber's mom (mum), Debbie
California, USA
Hi Amber's mum
ReplyDeleteThank you for taking time to read my blog and for your comment.
The brace I had on my leg was called an Ilizarov Frame it involved about 20 pins been put all the way through my leg and foot to correct my club foot. Its only these scars that are the opening areas for my sores and not the reason for them not healing. the sores are only surfaces wounds but that's bad enough, the one I have got is 4cm long by 1cm wide. The doctor thinks that the possible reason behind my sore not healing is CRPS and something (that a can't spell) which is when my body is fighting itself to heal.
I am currently working on my next blog.
I will have a read of your daughters story. Hope she is doing as ok as possible.
Take care
Jessica
Hello Jessica,
ReplyDeleteI recently discovered your blog and oddly it makes me feel less alone. I have had CRPS for 12 years now. I am currently 21 years old and was officially diagnosed at the age of 14 but we believe it started after I shattered my ankle and had screws put in (taken out 2 years later from pain) 4 years before that. I am now living a semi pain free life if that is even possible. I do not know if you have tried what has helped me but here it is. First my CRPS was so bad that I could not wear a sock or put weight on my foot. I used a wheelchair and then a cane. The first treatment I received after my diagnosis was a type of nerve block called a Bier block, I had 3 but they did not help. I tried acupuncture which made it much worse. Then I was told that a new technique that was having good results is called Biofeedback. Biofeedback was my savior. I don't know if you have tried it but I highly recommend it. I learned to control my pain and I use the techniques that I learned on my own everyday of my life. It also helped me to learn to sleep at night. After the nerve blocks were not affective I was told that my last chance to get better was to attend a chronic pain clinic. These clinics are a month long and for 8 hours a day you are pushed to your limits and learn to push yourself farther then you ever thought possible. You really have to believe in the people because they know what they are doing. Through physical, occupational, water therapy, biofeedback, and psychology I learned techniques that taught me how to manage my pain for the rest of my life. It truly was amazing and I am forever thankful that I was presented with this option. I do not know if they offer these types of programs where you are from but if so I would look into them because they allow you to be in control without having a device implanted in you. Today I still live with pain and some days it can be horrible, I cannot really exercise because the pain I feel afterwards is to strong and last to long. My most common symptoms are the inability to adjust to temperature change (my left side is always cold to touch) and of course I still get shooting pains but at a less frequent rate and less powerful. I also take pain medicine called Tramadol ER to take the edge off and at night I take Trazodone to help me sleep.
I hope that you will find my treatment success helpful and that these might now be options offered to you before.
Hello
ReplyDeleteSorry for the late reply.
I found it interesting to read your treatment success and i am really glad you found something that helped. Are you from the UK?
I am currently waiting to have the Spinal Cord Stimulator and was told my wait will be longer than I thought due to the hospital only doing the procedure once a month. Once I have had the operation and hoping that it is successful, I am hoping to go to the CRPS clinic at the bath hospital which is meant to be incredible and really helpful. So if the operation was to be successful, I am hoping they would really help me to be able to get my mobility back and any other things that are possible.
I hope you are doing ok