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Feeling Like I Am Going Mad

GuestGuest Member Posts: 1,968
edited October 2014 in Disabled people
Hi All

I haven't been on here for awhile so just thought I'd do a quick update and I could also really do with some support at the moment as I'm struggling to keep sane.

Somewhere on here there is a long post about bunion surgery and cp which many of you followed as I went through 3 years of surgery you shared the highs, lows and complications with me. I couldn't be bothered to try and find that post to do an update to it.
But the update is that I'm being reffered back to the hospital and the consultant as it looks like there could be further complications.

It looks like my little toe on my right foot is going sideways and under the toe next to it and also 3rd toe on that foot looks like it is either going over the second toe or over the fourth toe it varies but either way it is going over on top of other toes. On the left foot I just have pain in my little toe and it looks like that is curling under with no help from the other toes!!

On top of all of that because it has been such a cold winter my achillies tendons are really tight and painful plus the back and hip pain are also worse. The gp has just started me on baclofen again as I tried it years ago and didn't get on with it at all but I'm that desperate I've asked to try it again. So as I write this I feel drugged up to the eyeballs fuzzy headed and sick!! And that's only on 10mg but as yet have not noticed much difference in my legs other than not feeling very steady. Which means I've finally started to wear my pendant alarm thingy only had it about 8 or 9 years and never used it so I guess it's time I wore it seeing as I'm paying for it.
By the way does anyone know how long it takes for Baclofen to kick in and start to work and how long the side affects tend to last?

With all of that going on my stress related seizures appear to of restarted all be it in a different format to the past and the gp has now said I'm depressed and need support. Not sure where he thinks the support will come from though.

I had a chat with my social services supposedly in touch service today and some woman informed me that was I aware that depression was part of my cp. She'd been reading up on cp and if that's the case I should be able to cope!! Excuse me haven't heard that one before where they are getting their information from I've no idea. Luckily Scope helpline talk more sense and were able to tell me that they also had never heard of depression being part of cp.
At least some people out there still talk sense!!

Although I've already waffled on about this to some one on the help line thought I'd also post on here see if there are others that can help keep me sane and cheerful

Helen

Replies

  • pantherpanther Member Posts: 251 Courageous
    Hi All

    I haven't been on here for awhile so just thought I'd do a quick update and I could also really do with some support at the moment as I'm struggling to keep sane.

    Somewhere on here there is a long post about bunion surgery and cp which many of you followed as I went through 3 years of surgery you shared the highs, lows and complications with me. I couldn't be bothered to try and find that post to do an update to it.
    But the update is that I'm being reffered back to the hospital and the consultant as it looks like there could be further complications.

    It looks like my little toe on my right foot is going sideways and under the toe next to it and also 3rd toe on that foot looks like it is either going over the second toe or over the fourth toe it varies but either way it is going over on top of other toes. On the left foot I just have pain in my little toe and it looks like that is curling under with no help from the other toes!!

    On top of all of that because it has been such a cold winter my achillies tendons are really tight and painful plus the back and hip pain are also worse. The gp has just started me on baclofen again as I tried it years ago and didn't get on with it at all but I'm that desperate I've asked to try it again. So as I write this I feel drugged up to the eyeballs fuzzy headed and sick!! And that's only on 10mg but as yet have not noticed much difference in my legs other than not feeling very steady. Which means I've finally started to wear my pendant alarm thingy only had it about 8 or 9 years and never used it so I guess it's time I wore it seeing as I'm paying for it.
    By the way does anyone know how long it takes for Baclofen to kick in and start to work and how long the side affects tend to last?

    With all of that going on my stress related seizures appear to of restarted all be it in a different format to the past and the gp has now said I'm depressed and need support. Not sure where he thinks the support will come from though.

    I had a chat with my social services supposedly in touch service today and some woman informed me that was I aware that depression was part of my cp. She'd been reading up on cp and if that's the case I should be able to cope!! Excuse me haven't heard that one before where they are getting their information from I've no idea. Luckily Scope helpline talk more sense and were able to tell me that they also had never heard of depression being part of cp.
    At least some people out there still talk sense!!

    Although I've already waffled on about this to some one on the help line thought I'd also post on here see if there are others that can help keep me sane and cheerful

    Helen
  • mafalamafala Member Posts: 72 Listener
    Hi Helen,

    Sorry to hear that you're having a rough time. Being a manual therapist and reading this all I feel is that I wish I could get my hands on you and help you! It sounds like your calf muscles are getting really tight and pulling on your toes. The muscles that pull on your toes are in your lower leg and if they get tight and short they will start flexing your toes. Are you able to stretch your calf muscles yourself? If you can, keep doing it. You need to get someone to stretch your toes out daily. If the baclofen works it might make stretching easier.

    Depression being part of CP? What a load of nonsense. It may be a consequence of having CP, but it's not part of the condition. She must have mixed it up with stroke. Depression is part of stroke if you get it as an adult.

    Anyway, wishing you all the best.

    Maria
  • pantherpanther Member Posts: 251 Courageous
    Hi Maria

    I have very little movement in my toes a consquences of all the surgery I had a few years ago which I had the on going post on here about bunion surgery and cp.
    Basically after my bunion surgery all my toes except the big toes were curling under so I had further surgery that put pins in all my toes to pin them straight. This means I have very little or no movement in my toes because of the pins.
    The little toes on both feet were not pinned as they were too small and it is now one of the little toes that is part of the problem.
    I'm begining to think that maybe having all the surgery just brought me some extra time, I was told before I made the decision about surgery that if I didn't have the surgery I would end up unable to put shoes on because my big toes then were pushing the toes next to them under too much without the surgery I would of eventually ended up in my wheelchair full times all because I wouldn't be able to wear shoes. I now wondering if this will still end up being the case but am still waiting to hear from the hospital to go back and see the consultant as I was discharged I've had to be reffered again.

    As for the baclofen I'm not getting on with it I'm still fuzzy headed on it and my legs still get uncomfortable and go tight and sometimes into spasms. Most of the pain is around the area of my achillies tendons. But since starting the baclofen I've also noticed some spasms around my hamstrings at the back of my knees.

    I go back to the doctors next week so will see what he thinks and if there is anything else we can try. Will keep you posted.

    Take care
    Helen
  • mafalamafala Member Posts: 72 Listener
    Hi Helen,

    Please keep us posted and good luck with the appointment.

    xm
  • pantherpanther Member Posts: 251 Courageous
    Just a quick update the gp has taken me off baclofen and put me on to dantrolene supposedly it does the same thing as baclofen but as I didn't get on with baclofen he doesn't expect me to get on with this one. See my post on dantrolene for more on that one!!

    Gp has also said if he runs out of ideas he will refer me to pain clinic at Oxford doesn't care that I can't get there. Think gp has had enough and just wants to pass the buck and me the problem onto someone else.

    He also said it's possible I may never find something that helps because I'm the wrong generation. People born with cp years before me didn't have the surgical options I've had the same as children born with cp after me will have better understanding of cp and ageing due to the experiences people like myself are currently having.
    Doesn't help much now though.

    Don't think gp was happy either when I turned down CBT to try and help my mood with the argument that talking about the pain wasn't going to stop it or make me sleep at night so what was the point.

    On a slightly more positive note I have an appointment back at Oxford for them to look at my feet and see if there is a problem with all my foot surgery on the 19th March. Why all these hospitals have to be so far away and difficult to get to I don't know and why I fall through the gaps for hospital transport like everything else in life it doesn't make life easy especially when the appointment is at 9.30 in the morning.

    Helen
  • mafalamafala Member Posts: 72 Listener
    Hi Helen,

    The pain clinic in Oxford is very likely to offer you CBT too. That's how chronic pain is managed these days at pain clinics. It will be a combination of therapies including CBT. In CBT you don't just talk about stuff, but you will be taught techniques to cope with day-to-day pain and discomfort. I hope you will reconsider the GP's offer of CBT if it's available locally. It might be worth trying it out because CBT can be an effective way of managing chronic pain.
  • pantherpanther Member Posts: 251 Courageous
    Hi Mafala

    The gp wants me to do CBT for the depression not the pain. I'm not sure if these sessions would be locally or not but as I have no transport and the doctors surgery is too fsr for me to walk it still works out expensive going each week.

    I've tried pain clinic before at first they told me I was making the pain up then they said I'd tried all the medication they would of tried and they didn't have any other suggestions other than a pain management course.
    The pain management course was one visit where first of all they accused me of making up the pain then they read the cp and ageing factsheet by Scope said we've never heard of this but it's what you're describing don't know what to suggest you seem to understand your condition so we'll let you get on with it there's nothing we can do.

    To be honest I haven't met anyone that has been helped by a pain clinic I know a friend of mine with cp was offered a magnetic bracelet that didn't help then a lot of drugs which she takes but she says she still gets a lot of pain in her legs and she doesn't go anywhere because of the pain or the side affects of the drugs. If I was on as much medication as her I'd expect no pain but I'd also want to feel I could have a life!!

    Transport to all these appointments is my major problem as Oxford is not easy to get to from where I live if you don't drive. I don't qualify for hospital transport,because the appointments are out patient ones, taxis would cost too much money and I can't always expect my partner to take time off work to support me or my friend to be free to take me. It's not fair on them

    I'm begining to think do I just put up and shut up because I'm getting no where other than frustrating the gp who then just wants to pass the buck to somone or somewhere else I can't get too. It seems to be the story of my life I'm too in between and no one knows how to deal with it.

    Helen
  • miguelmiguel Member Posts: 3
    HI Helen I Read the post you had on bunion surgery.I believe that you thought that they only perform tendon lengthening on kids.I can personally tell you that they do it on adults to.I had my tendon lengthening two years ago I am 42 now .I hope this helps you in some way and by the way depression is not related to cp.
    good luck miguel
  • HymerkarHymerkar Member Posts: 63 Courageous

    Hi Helen,

    Like you I havent been on here for ages, but decided as nothing on TV tonight I would catch up on the forum.

    Sorry to hear all your troubles, I know how you are feeling, it really gets you down after a while, seems like you are just treading water all the time. Are you sure they dont supply hospital transport for Out Patients? There is a poster in my GP surgery telling everyone if they need transport to hospital to speak to the receptionist? Maybe things are different in Wales? Thats not very helpful, sorry.

    My last post on here was that I was waiting for an appointment to go to the Orthopaedic hosp at Wrexham for a Gait analysis. Well, I have been, and the upshot is that they want to release some muscles in my calfs and pin all my toes straight. Their report states that I expressed concern to them that recovery could be a long job and they had to agree that a person with CP will take longer to get back on their feet and that I should also consider that I may never regain the level of mobility I have now! And after saying that they still expect me to have the surgery.

    I am still back and forth to the eye hospital every 6-8 wks to check on my optical nerves due to the swelling in my brain, still taking the awful meds for that which also means monthly blood test at my gp surgery so I think I got enough to contend with at the mo and cant even consider surgery. Having followed you and your surgery I dont think I want to attempt it.

    I am also back on the Baclofen 10mg twice daily, this is also due to the cold weather and I hope to be off it again as soon as the weather improves. I am lucky as this does help. Both myself and my GP was shocked that the consultant from the orthopaedic hospital said that the dose of baclofen I take was rather 'homeopathic' and that I should be on 120mg daily!!!!!!!!!! My GP said I would be asleep all the time and floppy as a rag doll. It was in black and white in the report or my GP would have thought I had got it wrong.

    Doctors dont like us questioning their advice, but if we dont take our own destiny in hand who will.

    What some people i.e. your social services, is that the position we find ourselves in is extremely frustrating, and that in itself is depressing lol.

    Well, thats my moan over with.

    I will keep looking in, hope you feel better soon and that things start to look up for you. :rolleyes:
  • pantherpanther Member Posts: 251 Courageous
    Hi Karen

    Sounds like we've both got a lot to deal with at the moment. I understand what you mean about the surgery I know I only did it because they told me there was a good chance if I didn't I'd end up unable to put shoes on and I was in pain.

    You're right I don't think the doctors like being questioned the new tablets I'm on I only got because I asked the GP was there not any other muscle relaxants I could take instead of baclofen.

    Regarding transport I've only been able to get hospital transport when I was going in for surgery. There is a volunteer centre that does some transport but there are some hospitals that they don't go to.

    Although I've only been on these new tablets since Friday because most of the pain has gone except for when the tablet wears off!! My mood is a lot better which is what I'd been saying to the gp all along.

    Miguel all I know is that the hospital did a gait analysis first and then said they wouldn't do tendon lengthening in an adult because they can't guarantee the outcome. I guess it all comes down to whether you find a consultant that is happy to do this type of surgery in an adult.

    Take care
    Helen
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