Dealing with chronic pain
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Suggestions for managing pain?

SystemSystem Posts: 520

Scope community team

edited September 2019 in Dealing with chronic pain

Replies

  • curnewcurnew Member Posts: 8 Listener
    Hi Claire, Thanks for shareing your story. I suffer from chronic pain due to nerve Damage as a result of a botched up knee replacement. Because of the damage done i ended up having my bones in leg fused together using a fixater frame. One of the bolts went through my nerve. My consoltant refused let mebe seen by anyone else so by the time i did get seen by a nerve specialist it was too late the damage was permanant.My brain dosent cope and sends out pain signals to other parts of my body and i can totally loose the left side of my body.Having tried everything andbeing told a spinal stimulater wasnt for me ive been having lidocain infusions which worked. i had two infusions every two months. Ive now been diagnosed with ITP and have been told i cant have the infusions. So now have no pain relief. Im tiered all the time and fed up being told i have degenative breathing. i do as much as able to usually pushing myself too far at times having prop myself up to get breath back so can move. Im told its to be expected . I also have lymphodema in both legs. oh and osteo arthritus . Im 53 and have 4 Grandchildren.  I refuse to give in but some days it gets too much . any suggestions to help ?
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @curnew and a very warm welcome to the community!

    I'm sorry to hear that you are in pain and that the surgery has had such a big impact in terms of pain. You sound very determined to keep going, it's completely understandable that it can become too much though.

    What kind of things have you found beneficial so far? Have you ever been to a pain clinic?
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  • curnewcurnew Member Posts: 8 Listener
    Hi Chloe yes ive tried my local pain clinic and am now under the Roya nationall Orthapedic Hospital clinic. My local pain clinic eventually told me the only thing wrong with me was i was too emmotional and needed see a phsychiatrist and then id be free pain. What havent i tried. ive had tablets patches galore pre gabalin a strong opiate called tipotal or something like that. When i transfered to RNOH they told me i had two options but one wasnt suitable. I went on to have the lidocaine infusion twice every two months.This helped but now ive got ITP they think ill have to give it up and have nothing else to offer. Having read the posts on here i kinda feel i havent got much to complain about..
  • zakbloodzakblood Member Posts: 419 Pioneering
    pain killers long term don't mask the pain, they only get hooked on them and then each year you need higher and higher doses until you need a new tablet altogether, after 20 years for me, the best advice is exercise, water based at time of high need, land for when your feeling somewhat better, diet, a good well balance diet so you carry no extra weight, low BMI also gives lower blood pressure and less weight gives less aggro to the joints and bones, so you know it makes sense.  
  • curnewcurnew Member Posts: 8 Listener
    Hi Zak one of the problems is my limited mobility i was swimming regularly but the fees went from £200 year to £400+ and changed what i was doing so no longer suitable. Having no knee and fused legs even getting in a pool with lifts isnt always possible.The pain and swelling in my feet and legs limit walking. Steroids dont help weight . iknow i need do moreto loose some .My BP is good .
  • zakbloodzakblood Member Posts: 419 Pioneering
    that's high, my local pool charges a flat rate of £20 per month, which lets you use the pool and gym, all you need is proof of a benefit and you get that reduced.

    and yes agreed Steroids don't help what so ever, try and find a local Hydro pool and see if that's any better for you

    https://www.versusarthritis.org/about-arthritis/treatments/therapies/hydrotherapy/?gclid=EAIaIQobChMIhd3S2Lys5AIVDbTtCh2keQADEAAYBCAAEgICuvD_BwE
  • EmmaBEmmaB Member Posts: 263 Pioneering
    Hi @curnew
    If you do decide you want to keep up swimming it is always possible to try and negotiate what you pay, these places are after all businesses that want money. 
    For example I think there's an argument to be had [you could even argue it's reasonable adjustment] for a reduced gym/pool membership if all you can use is the pool and only for 20 mins at a time or something like that.  I think it's just a case of putting forward your argument for a reduced fee and seeing what they say [perhaps being a bit persistent!].  
    There is also now a move to increase social prescribing, this enables GPs, nurses and other primary care professionals to refer people to a range of local, non-clinical services - it might be worth asking your GP about whether they know anything about this and whether this might include gym/pool membership, you just never know.
    All the best.
    Emma
  • curnewcurnew Member Posts: 8 Listener
    Hi Emma the session i was going to was through gp and was meant for people with limitations recovering from operations. id been going for couple of years then they changed everything . the class was no longer suitable and they doubled the price. Iasked about a swim only pass and they said no id have to have a gym/swim pass even though i cant use the gym. i am looking for a pool i can use but am struggling to find one at mo . I will keep trying  
    Thanks
    Sara

    P.s i get told that we dont cater for people with your needs as there isnt a demand.

  • zakbloodzakblood Member Posts: 419 Pioneering
    nobody goes to the library any more, but they stay open, even though there's no demand.

    kids don't spend much time on parks, but there still there even when most kids are playing online.

    so what's the point of the post / reply, simple, explain to them are they a service? or is it private, if private they can do as they like, if it's public it shouldn't matter if there's no demand or not, as if you ask for something and they don't provide it because lack of demand, you've just ask, so there is a demand, plain and simple.

    most public baths around where i live have disabled only sessions, most hydro center's cater for anyone who pays, as it's a one to one session, so yes not cheap, but nothing in life ever is, but the benefits out way the costs for most and imo are well worth it for the gains v's cost, so keep looking and fingers crossed you find something suitable, if not complain, as you get no where now days with it most of the time, the world can't just be about others making money all the time, sometimes it has to suit the few, not just the many
  • newbornnewborn Member Posts: 683 Pioneering
    My above all help is not getting cold, and  always having  an electrical heat pad nearby, preferably  infrared.

    But of course any public funding for exercise should prioritise the needy, exclude the greedy.   Hydrotherapy pools in every town centre, from which kids and already fit and healthy people are banned.  Mornings women only, afternoons mixed.   All staff female  only,  including senior management. 

    This to take account of all research  showing females are disadvantaged as users, especially if they are not barbie doll shaped 20 year olds, and especially if they have modesty required by religion, and especially if they need to strip down to a swimsuit in front of strangers.( It is bonding  for women only, meaning people not born with a penis, let alone sfill in possession  of one)

    Staff in fitness industries  are not gender balanced,  so it redresses inequality to have females  only on the staff. It also  ensures that if women attend the morning, women only sessions,  they wont risk finding a strange man staring at them, because he is taking his turn on the rota.  Shared spaces are experienced as male spaces, where women cannot emotionally relax and feel safe.  

    Men are not shown in research to have  inhibitions about female nurses, care staff or pool attendants, nor to feel afraid in the presence of a strange woman, so the afternoon mixed sessions would suit them, and would suit couples who wish to attend together.

    If anyone knows a way to trace or access hydropools please give clues.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @curnew, I'm sorry the pool was no longer accessible for you, I understand how frustrating this must be. As @EmmaB has said, social prescribing is becoming more common for GP's to prescribe.

    Here is more information about it: https://www.england.nhs.uk/personalisedcare/social-prescribing/ 
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