Hello I'm Claire, ask me questions about living with chronic pain

1235

Comments

  • Sarahosullivan
    Sarahosullivan Online Community Member Posts: 7 Listener
    @justJohn hi I just read a little on you.. I have small fibra neuropathy tuck ove 1 year to diagnosis me cos it doesn't show on a nerv conduction test.. Start in feet and hands.. Works up legs I'm not a doctor but if you Google that and see if it sounds like you.. I not sure if I am a loud to give this advice only just joined.. Good luck.. 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,455 Championing
    No, I don't believe so @Miss406. However, you're more than welcome to start a discussion in our dealing with chronic pain category if you have a question or something else you'd like to share :) 

    You're welcome to share personal experiences @Sarahosullivan, just not medical advice or diagnose anyone, as of course if someone is experiencing pain it's important that they consult with their medical team to get a diagnosis and look into the right treatment options :)
  • Sarahosullivan
    Sarahosullivan Online Community Member Posts: 7 Listener
    Thank you and I'm sorry if I spoke out of turn 
  • Mrssherbott
    Mrssherbott Online Community Member Posts: 8 Listener
    Hi Claire, 

    I was awake at 3am again this morning. My brain is wide awake and going 100miles per hour . I have a headache which is usually what wakes me up. My abdomen is in agony and I’ve just been to the toilet for a wee for the 10th time tonight.  
    Im in turmoil as I can’t switch off, even though I do my best thinking when the world is asleep, it promotes anxiety and stress as I  I frantically rush to get all the things out on paper that weren’t processed yesterday and sometimes, I remember a week later. When I read it back it makes no sense and jogs no memories. 

    Your post resonated with me as I recently had to stop Mental Health nursing and I’ve come off the register, and I’m a mum of 4 and I’m plagued by chronic pain, brain fog and fatigue.  I struggle with noise sensitivity, light and smell. I’m hyper vigilant which leads me to exhaustion. I can walk for very short periods but in pain and I can’t stand for long. I fell down some concrete cellar stairs back in the first lock down and some days it’s like it’s still broken. I’ve neuropathic pain in my legs, groin  back face and hands. On top of this I have a bile acid malabsorption so I’ve diarrhoea most times I’m awake. 

    I had been falling without explanation for a while and struggled with pain and fatigue for years. I had done everything to work around my ailments but at the end of the work day of days I would be in so much pain and I’d sleep days away. 

    I can still sleep days away but this will happen when I’ve had about 10 sleepless nights. The children are school age, so this morning, by the time I feel like dozing off again it will be time for them to get up. 
    I used to try and sleep through the school run which helped somewhat but I was getting more depressed as there was little time in the day for me to be with my family. 
    I loved my job and I spent a lot of time at work and with my work friends. 
    There was no in between. I have now learnt that my only thing in common with them was my work. When I wasn’t at work we’d go on family holidays so it’s just me, my husband and kids.

     I love my family and they do everything for me and are most times patient and understanding. 

    They just don’t seem to get why I just find it’s very lonely, at 2, 3 4 am, in my pain, in my loss of my “friends” career, loss of being a provider and of my autonomy and independence. I wanted to reach out to you as someone whose had a similar situation and to see if I can develop a support network and to try and find ways to cope. 
    Medication alone has not been efficacious. 
    Group therapy doesn’t meet with my physical state and CBT isn’t effective for me.  People suggested I volunteer to help others, however, I tend to take on issues in that brain of mine which leads to a trigger. So, I’m hoping to strike a balance. Im a people person so, Im putting myself out there. Thank you. 

  • Mrssherbott
    Mrssherbott Online Community Member Posts: 8 Listener
    I wonder how many people have a similar situation and found there job to be a big part of their lives and lost their identities in the process of I’ll health and disability. 
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,611 Championing
    Miss406 said:
    Is Claire still here to ask questions? I notice this post has not had any replies since October 2020. 
    Good morning, thanks for your comment. 

    I am unsure if Claire still accesses the community, but you are more than welcome to post any queries you have here, or create your own discussion in our chronic pain category, and other members might be able to offer their insight.
  • chiarieds
    chiarieds Online Community Member Posts: 16,688 Championing
    Hi @Mrssherbott - & welcome to this friendly & supportive community. As someone who also lives with chronic pain, mainly neuropathic, & can identify with some of the problems you face, I wanted to point out a very helpful post that Scope put together, which is about coping with stress & low mood. There are things to try to help both physical & mental health, & I hope you find some worth exploring.
    Chronic pain has been discussed quite a bit on the forum, & it seems that often it's a combination of different things that can help alleviate it somewhat. Personally I use gentle exercise, the diaphragmatic/abdominal breathing exercise in the link above, & distraction mainly. Many find meditation helps, & you'll find a link there too about this. Hoping some of this helps. :)


  • chiarieds
    chiarieds Online Community Member Posts: 16,688 Championing
    edited January 2022
    Totally agree with a hot water bottle, breathing exercises & meditation @Libby_Scope however there is very weak evidence about 'transdermal magnesium sprays.' Please see: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5579607/

  • Mrssherbott
    Mrssherbott Online Community Member Posts: 8 Listener
    Hi@ chiarieds and @ Libby Scope near with me I’m new to this. 

    Today is a bad day and my legs are sore and so I’m grumpy. I totally agree with you about pain and mental health. There isn’t one without the other.

    Best to avoid everyone when I’m like this.  
    Yes, I have become dependent on my hot water bottle more recently. 

    There are days when I try to push through my pain and pacing isn’t always possible otherwise I’d never get anything done. 😅 ty for the welcome.


     
  • Mrssherbott
    Mrssherbott Online Community Member Posts: 8 Listener
    I may try the magnesium spray too, after researching of course. 
  • Mrssherbott
    Mrssherbott Online Community Member Posts: 8 Listener
    @Libby_Scope
    Thank you, I roll with the punches. A bad day is just that. I allow myself to have them and call them what they are. I just try to get through to tomorrow hoping it’s a better day.
    It may sound silly and dramatic but waking up is an achievement.  As when, I’m having a good day those are equally as recognised. As I said before, the pain though I hate it isn’t the worst part of my condition it’s the isolation and unsociable parts that affect me even more so and dare I say cause more physical and mental pain. Hope I make sense. 
  • JaneC_
    JaneC_ Online Community Member Posts: 21 Connected
    ClaireSaul said:
    littlemole said:
    I also have CRPS, degenerative bone desease and fibromyalgia, I wouldn't call it living.  My life has changed completely and I can't deal with it so I also suffer with depression. I had to stop working and stop driving anywhere on my own because when I get to where I'm going I can't walk far so need someone to come and push my wheelchair as I can't walk far . How do you accept it because I can't. 
    I am sorry you are having such a tough time - I think that many of us living with chronic illness also suffer with what my GP describes as "reactive depression".  Losing my career & then being told I shouldn't drive were the biggest blows to my independence. I too also have to be pushed in my wheelchair as more often than not my shoulder dislocates when self propelling.  How do I accept it you have asked?  Honestly....it varies from day to day.  I have accepted that if I want to take part with friends and family that using a chair gives me freedom that the pain from walking stops. I try now not to make too many plans and to pick my battles to fight - be it the activities I really want to do, the times that I really need medical help (I hate going to A&E).....I do have really low days when I think about the "friends" who have left me behind, the things I can't do with the kids....but I have tried hard to channel this frustration & anger into a bloody mindedness to the things I still can do, like reading (so I write book reviews, joined online book clubs), writing (starting my blog) and chatting (online - so blogging community, this online community)....Netflix and the Movie channel have become great friends.
    Please don't think that everyone else who you see talking out here are all coping all the time - we're not and you mustn't think badly of yourself for feeling you can't accept things. I think the fact you can't can be the fire in you to keep yourself going!  Please let me know how you are doing,
    Claire
    Thanks @ClaireSaul this is a very open and good description of living with chronic pain, which I hope others will find helpful. I too have chronic pain and connect with much of what you’ve said. I am lucky to have attended some good pain management courses as a result I manage it partly by 
    * accepting my pain and it’s effects on me to get help (aides, adaptations, people etc) to do things and make life easier and more enjoyable
    * priorities the things I enjoy and get doing them
    * mindfulness and 
    * knowing how far to push myself or when to rest without giving up per se
    It Includes accepting there are no good or bad emotions and it’s normal to get angry, frustrated, anxious, and sad at times. 

    @littlemole I’m sorry to hear you’re having such a difficult time and hope you get some help to manage your pain - the GP or other clinicians can help you plan for pain flares, including medication. You certainly seem to already use a lot of useful things to help. 
    Do Let’s us know how you are getting on.
    Jane 

  • Debz101
    Debz101 Online Community Member Posts: 6 Listener
    Hi, I too suffer from chronic pain on a daily basis, i have fibro, spinabifida and scoliosis of the spine, and oesto-arthritis.  I struggle daily, work have been absolutely fantastic making lots of reasonable adjustments.  I cant say the same for the DWP - I get higher rate daily living PIP, but lower rate mobility even though I dont drive much anymore, i cant get on and off buses, i struggle to walk far at all, having to stop at regular interevals as the pain in my back, hips and knees is horrendous (i have already had a knee replacement at 49) I really dont know how to get them to understand the pain i go through daily which is awful and along with horrible fibro-fog I am at my wits end!
  • KVB111
    KVB111 Online Community Member Posts: 13 Listener
    evening guys &gals. I have suffered with my Stomach and Bowell for over 20 years now and I have spent so many weeks in hospital because of the 11 surgeries I have had to have because of diverticulitis and chrohns and as you can imagine some days the pain affects my health. 
    So 10 years ago I had to have a partial gastrectomy because of an ulcer that I tried to hide and forget about but in the end not good, I was booked in for an endoscopy to see the reason for my pain and as he pushed the camera into my stomach he came straight out and  they rushed me to surgery because my ulcer had eaten through my stomach and attached itself to my Pancreas 😳
    fast forward to present time and I had to have the rest of the stomach removed because I would die. My pain is worse now than it has ever been and I have been on painkillers for over 15 years and I can take triple my tramadol and triple my oramorph but still it hurts , consultants have said more of the bowell is going to have to go too . Can I claim PIP because I am not working now and on SSP can I get help as I don’t know how the system works as I have always worked 
    thanks in advance 
  • chiarieds
    chiarieds Online Community Member Posts: 16,688 Championing
    Hi @KVB111 - I'm sorry to read you have been suffering so long. Regarding PIP, & you can claim it whether working or not, certain activities of daily living are looked at with an application as well as your mobility if that's also an issue.
    PIP isn't about any diagnoses, rather how any problems may affect your ability to perform any of the activities/descriptors 'reliably' that are looked at with PIP. Start by looking at these here: https://www.cambridgeshire.gov.uk/asset-library/personal-independence-payment-descriptors-and-scores-april-2022.pdf
    If you have sufficient National Insurance contributions from the past 2 financial years (up to 5 April 2022), you may also be able to claim New Style ESA. You can apply any time from when your SSP is 3 months from ending so that your ESA could then start when your SSP ends. You would need to get a SSP1 form from your employer.
    How to check your NI contributions: https://www.gov.uk/check-national-insurance-record
  • KVB111
    KVB111 Online Community Member Posts: 13 Listener
    many thanks
  • Bubbles007
    Bubbles007 Online Community Member Posts: 5 Listener
    Barbiesnemesis said:
    Hello @Claire, I too, like others here, have fibromyalgia and as Henry says it is a curse! There seems to be no real help out there except 'self management' and medications that have negative side effects and no positive benefits. Also I have severe depression and anxiety which means it is difficult, nigh on impossible, to motivate myself any more. I have fought against my depression for my entire life - I am now 54 years old. I lost my job, my friends, my financial security, and my 'raison d'etre. I can't see the point of me any more; I just exist with pain in my body and pain in my mind. 
    Aw gosh I am sorry for your pain I hear you and send love and strength to you ❤️ 
  • gareth79
    gareth79 Online Community Member Posts: 2 Listener
    Hi Claire , 
    I have joint hypermobility and fibromyalgia diagnosed 2 years ago, my mother also has fibromyalgia diagnosed over 20 years ago.......
    I don't take anything for pain, arms, shoulders, wrists, ankles and legs all hurt, fatigue is so annoying....although still work 40 hours study 20 hours a week and get on the push bike when I can .......
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hello and welcome @gareth79 thanks for sharing your experiences in this discussion, it sounds like you've got plenty on your plate!

    Do you feel as though you would benefit from any additional support for managing your pain, or just generally managing things day to day? If you're interested, you can look into self-referring for a needs assessment. This can help with aids and adaptions you might need at home for example, to help lessen any high levels of fatigue.

    What are you studying at the moment? :) 
  • durhamjaide2001
    durhamjaide2001 Scope Member Posts: 13,437 Championing
    My questions to Claire are
    How is it like parenting with chronic pain?
    How do you cope with your pain? 
    Is there anytime you aren't in pain? 

Categories