Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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This topic contains 13 replies, has 6 voices, and was last updated by  Garyc5224 5 months, 2 weeks ago.

Viewing 14 posts - 1 through 14 (of 14 total)
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  • #22408

    Garyc5224
    Participant

    Hello fellow sufferers and carers,
    I’m Gary 47 y/o just joined this website.
    I had an accident five and a half years ago
    Two broken ankles and broken wrist. Since my accident I’ve had five operation on my ankles and two on my wrist and require further surgeries, ruptured tendon repairs and 2 bones to be removed from my wrist.
    I’ve recently been diagnosed with CRPS although I’ve been suffering with the condition for at least a few years.
    I can walk with crutches around the house but not any further and will pass out if on my feet for to long (10 minutes ish) i started using a manual wheelchair just to get out of the house, was a decision i didn’t take lightly and didn’t really want anyone to know.
    Having recently been diagnosed I’ve been inundated with hospital appointments, pain clinic, extended scope physio pain specialists, podiatrist, psychologist, vascular and of course still seeing my orthopaedic consultant.
    Have been made to feel that me using the wheelchair is wrong to use. It’s the only way of getting about and explained that this isn’t an instead walking, I can’t walk and if I didn’t use the wheelchair i would be stuck at home.
    I really want to ask you all, if you are a wheelchair or mobility scooter user if you are getting a similar treatment.
    I feel very alone with my condition withdrawn from social life apart from a couple of friends. I’ve begged my consultant to take my legs of in my darkest moment.
    Opiate dependent and about to start reducing my dose as tramadol no longer helps with the pain despite upping the dose. Once I’m off the tramadol i can then start to take gabapentin which in not looking forward to.
    Sorry for ranting on, was only meant to be a short piece to introduce myself.

    #22423

    UniQuegurl70
    Moderator

    Welcome Gary !
    Sorry you have to meet us this way. Please look on the website and we have a Facebook and Twitter page.

    ~lori

    #22506

    Hi Gary

    Welcome to the Burning Nights CRPS Support forum! Please do feel free to rant and complain that’s what the forum is about – giving people the chance to get things off their chest. Living with CRPS can isolate people and problems can seem ten times as large sometimes when you’re isolated.

    As Lori mentioned if you’d like to follow us or message us via any of our social media channels please follow the social media buttons in the top right of your screen and these buttons will take you to the corresponding social media timeline of ours.

    We’re here to help and support you when you need.
    Best Wishes,
    Victoria

    #22952

    jvanna
    Participant

    I am sorry that this is a very late reply but I have not been in the forum for a very long time…so long I had to reset my password. I am a full time wheelchair user due to having a locked foot drop on the right and a nonlocked foot drop on the left and a necrotic hip on the same side as the locked foot drop but even without the hip I would be unsafe on crutches and have no ability to place right foot on the floor as it is curved and pointed down permanently. It means I can have some form of a life and it sounds like you also cannot get out of the house or have a life so whilst it is clear you are trying hard to keep some mobility within the home it seems like safety would be at risk if you tried to leave the home and this would be likely avoided by you as it would be so difficult. Can you explain that this is how you maintain some independence? My chair is motorised as i cannot push with arms and hands due to crps and RA. I understand how frustrating this must be. I know we are required to move as much as possible with crps but as much as possible is the key.

    #22953

    Garyc5224
    Participant

    Hi Jvanna,
    Thank you for your message regarding my post.
    I would say I’m an active wheelchair user, I clock up around 30 miles a week and is a distraction technique for the pain of my CRPS. I use crutches at home to get around only because it is impossible for me to use a wheelchair indoors. I find now getting around on crutches is getting harder to do, and I’m stil passing out because of the pain when I don’t listen to my body.
    If I’ve not mentioned before CRPS is in both lower legs ankles and feet possibly knees, also I have defects or injuries in both ankles which multiple surgeries have been unsuccessful in fixing them.
    Since my diagnosis of CRPS (February 2018) (although suffered for longer) my orthopaedic consultant has postponed indefinitely any further surgeries, so I have the injuries and CRPS to deal with.
    Stil trying to find drugs that work for the pain, currently using gabapentin and nortriptyline but have little or no effects for my pain and of course sleep is nigh on non existent. Yes we are told to keep using limbs that are affected but without any pain relief and injuries to my affected limbs this is impossible.
    My wheelchair is my only salvation, it is a manual wheelchair and I go off over pavements, up and down Kerbs, through parks and over hills, it does distract me from my pain but as soon as I stop back comes the pain(I know the pain is there all the time and it’s just my brain being distracted) music through my headphones has a similar effect if I can zone out, doesn’t always work.
    I hope this explanation helps and I have answered the questions you asked.

    #23142

    chrisvanf
    Participant

    Hi Gary

    Sorry to hear of what’s happened in the past and present. the best thing I found was someone (my GP and pain management specialist) who would listen and who knew what I was talking about.

    I found smarties did more to kill the pain than Gabapentin did, Codeine is working (with paracetamol as an accelerant, codeine works better with paracetamol) and Amitriptyline or now Nortriptyline at night works at the mo. I am taking a couple of other meds for the depression anxiety stress etc.

    I use an electric scooter the portable boot type with a crutch holder,I find it does the trick, I have told the people I see and while they say I should limit it’s use they’re ok with it, I tell them that at least I get out and free myself, think of something else, not sit rotting in an armchair waiting for the pain to subside, they simply say do as much as I can bear, then rest, repeat.

    Chris

    #24017

    Becky
    Participant

    Hi Gary.
    I’m new to the site but I am a wheelchair user when out and about as it’s in my right ankle, knee and now spreading to my hips. I’m on the same medication that doesn’t work but the doctor’s don’t know how else to treat me as I’m allergic to codine based drugs. I find the pain is always worse at night so sleep is something I miss. But what I’m finding hard is adjusting to being in a wheelchair. I just feel like it’s unfair that my brain is doing this and there is nothing I can do to stop it. Sorry turned in to abit of a loan it’s just no one seems to get it x

    #24018

    Garyc5224
    Participant

    Hi Becky,
    No need to be sorry, I understand your frustration and your pain.
    It took me a long time to even get in to a wheelchair let alone use one, but I finally did, didn’t want anyone to see me, kept my head down. It wasn’t easy using the wheelchair found I quite hard but I kept at it and little by little I got more used to it and I started enjoying just to be outside, feeling sun on my skin, wind on my face (would’ve said hair but I haven’t got any) I go out pretty much every day now. I have CRPS in both lower limbs, I can use crutches for very short times, if I’m on my feet for to long I will pass out.
    If you want to chat more I’d love to hear from you. Ask whatever you like.

    Gary

    #24065

    Becky
    Participant

    Hi Gary.
    Thank you for replying. Just had a really bad time with it lately seems to be getting worse and I can’t move my left hand which makes it harder.im sorry to hear you still passout with pain, can’t they supply you with any stronger pain medication. My doctor is trying but he keeps on upping my gabapentin and amitriptyline which don’t help. IV now had an electronic wheelchair due to my hands. IV tested explaining what I have got wrong to my family but they think I can think the pain away and the nerves which is frustrating as you can’t think it away.how do you cope with what people say as I don’t want to get annoyed cause of the emotional link it makes it worse.and does it ever go away cause
    Best wishes
    Becky

    #24067

    Garyc5224
    Participant

    Hi Becky,
    Sorry to hear you are having a tough time of it, I think we all are in some way or another. I’ve had a flare up this week and spent many days in bed, I’m determined to get to Burning Nights annual conference in Newcastle tomorrow and I will get there.
    Pain is very real and very personal to each and everyone one of us. At the moment I’m reducing my gabapentin to start pregabalin when I’m next at my pain clinic next week so effectively I have no pain relief, it’s difficult and hard but we try to get along the very best we can.
    Trying to explain to friends and family about how you feel, the condition of CRPS and how it affects us is difficult to say the least, I’ve seen the eyes glaze over and the blank expression of people you’re trying to explain things to. The fact sheets and literature Burning Nights publish is a good starting point and will explain in general what the condition is and how it can affect you, wether you choose to go in to more detail is entirely up to you. Personally I don’t go in to to much detail especially the mental side of it, this week I didn’t want to live, wanted to end it all while in my latest flare up, I’d had enough, I think it’s ok to think that ( still waiting to see psychologist 6 months since referral) but maybe wrong if i try to act on it. I suffer terribly with this brain fog and sleep is pretty much non existent 2-4 hours a night broken sleep.
    I would encourage you to speak to people with CRPS and if you can meet others at meetings and conferences, you will see you are not alone there are others and some of symptoms you have others will have to.
    I did send a friend a link to the spoons theory (don’t know if you have read this) it’s a good description of what it’s like to live with a chronic illness, my friend seemed to of got that as in she understood it a bit more.
    I’ve developed a bit of a thick skin and basically don’t really care what other people think anymore (which is a lie) but on the outside I don’t but inside it does hurt when someone makes a comment or doesn’t listen.
    I don’t have all the answers, but can try and tell you how I feel, how it makes me feel and how it affects me so you know YOU really aren’t alone out there.
    I hope this sort of helps you or answers some of your questions.

    Look after yourself Becky, here if you want to talk more of ask any questions

    Gary

    #24102

    Becky
    Participant

    Hi Gary,

    How was the conference did you manage to go?
    I wondered if you know if crps goes in other places or just stays where it started or can I go anyway or does it follow.sorry just can’t seem to get a straight answer.hope your well?

    Warm wishes
    Becky

    #24187

    Hi Becky,

    In answer to whether CRPS goes into other places or not. CRPS will usually spread from the initial site to surrounding areas in the first few months or even a couple of years. But after that each person is an individual so the CRPS may not spread into other areas of the body, in some people it will. It can spread theoretically where there is a nerve. But it will usually spread to the opposite limb or mirroring the original site or to the upper limb or diagonally.

    Please take a look at our page on the Spreading CRPS section

    Hope this helps!
    Victoria

    #24230

    Becky
    Participant

    Hi Victoria.
    Thank you for the reply.my doctor’s are convinced that it doesn’t and they seem to think it’s in my head and the cure for Crps is to think yourself better but after talking to people on here,i realise I might need a new doctor.to get any medication or pain relief from them is a nightmare but there doesn’t seem to be anyone that specialises in this disease to be referred to but just talking on here makes it feel better knowing I’m not going mad.
    Some days are better then others but in a good day everyone thinks in cured but it’s just I’m getting better at a brave face I’m so glad I found this site as everyone here understands the struggle and as know one really knows what it is.its nice not to have to keep explaining myself. Hope your well

    Best wishes
    Becky

    #24255

    Garyc5224
    Participant

    Hi Becky,

    Many apologies for not replying, I completely forgot that I needed to reply.
    The conference was really good and just being in same room as other sufferers made
    A huge difference. Actually seeing others
    And knowing we truly aren’t alone even when you sometimes think so.
    Being with others is the best medicine I’ve had by a long shot.

    Wishing you a happy new and may it be a
    Good one for you.

    Gary

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