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Low Spoons and Low Mood

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HanzRolo
HanzRolo Community member Posts: 60 Courageous
Hey all

I have been really struggling with low mood in the last few months.  My chronic pain seems to be getting worse and I don't feel comfortable with the GPs I have.  The last time I spoke to one, I was hoping to reduce my meds, but since then my pain has increased.  I have been taking Tai Chi classes and I find that it's helpful with both my mental and physical health, but I find myself exhausted, especially travelling on public transport and trying to get from the bus stop home. It's a deep exhaustion and sometimes it takes me at least a day to recover.  If I do anything on those recovery days, it ramps up my pain, exhaustion and feeling generally awful.

I am wondering if I have more than just the chronic pain in my lower back with sciatica down both of my legs.  I have a lot of friends with fibromyalgia who discuss things that they are struggling with and find I am going "oh I have that.  I can relate to that too".  My first cousin has fibromyalgia so I am now wondering if it's something that runs in families.

All the pain and exhaustion and not working and struggling to get out of the house and all that comes with that has made me really low.  I spoke to the GP about it when discussing lowering the meds.  He just said "oh you might want to see a counsellor" which doesn't help when I'm only receiving PIP at the moment.  I've not applied for UC up to this point because I had issues with ESA when I first went off work and I'm terrified that the DWP will force me into work.  Sitting, walking and standing for any period of time causes me to have a lot of pain, especially sitting in seats that aren't my padded up sofa seat.

I just feel really helpless and I feel I'm constantly whining and moaning and being negative.  I have a few friends who get it who either have chronic pain themselves or fibro and they GET it, but I don't think others do, including my partner and family at times.  I have to keep reminding them of my limits.

UGH!  Sorry for the vent/rant.  I needed to get it out.  I have called the Samaritans recently sobbing on the phone.  It's my 38th birthday on Sunday and I just feel my life has been stolen from me.  I was working in the job I had gone to university to do and now I just feel totally worthless and a moaner.

Comments

  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    Hey @HanzRolo, thanks for posting and opening up about how you feel. It can take a lot sometimes to be so honest about how you feel so I really appreciate it. You're more than welcome to have a rant or just discuss how you feel any time on here :) 

    When you say you aren't comfortable with the GPs you have, what do you mean by this? It might be worth going to see a different GP so that you can hopefully find one who you feel better around. Of course, if you ever have questions or concerns about your mental health or physical health then speaking with a GP you feel comfortable with is really important.

    Do keep hold of the Samaritans number if you ever need to access them again, and I would encourage you to do your best to relax and do the things you enjoy. Do you have any plans for your birthday? :) 
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  • HanzRolo
    HanzRolo Community member Posts: 60 Courageous
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    @Ross_Scope I live in a rural area and we have one GP practice that covers about 5 different villages.  Most of the time, you are given whatever GP is free at the time.  Sometimes the one you get is great and other times they just seem to want to fob you off.  I know a neighbour whose husband was fobbed off until he fell really ill and it ended up that he had terminal cancer and he only lived another week.  There's a lot of distrust from people I've spoken to locally about both our GP practice, the receptionists and now our pharmacy is a farce.  I have moved around a lot over the years and never have I felt so uncomfortable to even speak to the receptionist to put me in touch with the GP.  I have put in a complaint a few years back about how I was spoken to, they now have a system where they can record the conversations so if there is conflict they can look into it.

    The problem I now have is that since Covid, they will only let you book an appointment on a Monday morning in advance.  That's the day I have my Tai Chi class and am leaving to get to my class so unless I skip class, it means I can put in a request to speak to a doctor.  It's an absolute joke of a system, but that's what the receptionist told me the last time I tried to arrange to speak to a GP.  And of course I'm not a priority because my health problems are on going rather than something urgent or new to deal with.

    I do see an NHS physio through their Pain Clinic and he is very helpful, but he can't do any of the meds side of things or anything to do with my low mood.  I'm told just to keep walking by everyone though which gives me a huge flare up and I really am anxious if I'm out by myself.  My partner is a nightshift care worker so unless he's on a day off, I feel very uncomfortable going anywhere by myself.  My Tai Chi lessons are very accessible so it's minimal walking for me to get there (getting home is the problem).

    Ugh, I'm sorry I'm just totally overwhelmed.  I'm still processing and grieving the life I had before this kicked in 3 and a half years ago.  Covid has delayed the reality.
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    Hi @HanzRolo nice to meet you.
    Chronic pain is a nightmare, i to suffer so i know what your going through. The constant tiredness and low mood is all part of it as well, being in pain 24/7 causes all this and sometimes the meds.
    You say it's sciatica have you had any scans etc or are you under the hospital ?
  • HanzRolo
    HanzRolo Community member Posts: 60 Courageous
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    Hello @SueHeath

    Yeah I go to sleep in pain and wake up in pain.  I'm on 300mg of Pregabalin and paracetamol as I need it (I only use the paracetamol when I know I've got something I have to do or if I'm really struggling).  I use heat on my back too, though not in this weather haha.  They've tried me with Amitriptyline, Diazepam, Gabapentin and Pregabalin was the first one that actually started to take some of the pain away, though it's made my word recall slower and when I first went onto it I developed a stutter. 

    Yes, I've had two MRI scans.  The first one picked up a protruding disc but the second one didn't show it as pronounced.  And I'm under the Pain Management Clinic through the NHS for physiotherapy.  I had a different NHS physio before but this one is more specialised.  I also had the occupational therapist for a discussion on things to make things easier so I have a bath board so I can get in and out to shower and I have a hand rail next to the toilet plus a walking stick (which I've asked about in a different post today).

    My parents aren't convinced by it just being chronic pain and are suggesting that they'd pay for me to go private to get a second opinion.  They don't want to accept it which makes it harder for me to either accept it and just try to get on with it or how to move forward.

    I really struggle walking and standing more so than sitting (if the chair is right that is).  What used to take me 30 mins to walk to and from the pharmacy/GP took me 3 HOURS a couple of weeks ago.  I ended up sat on someone's wall crying because I was really struggling.  A neighbour helped me to walk the last bit of the way.
  • Sandy_123
    Sandy_123 Scope Member Posts: 52,535 Disability Gamechanger
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    Hi @HanzRolo you are not alone, I too suffer with my spine. I'm restricted to what I can do, also pushing through the pain. I sympathise with the walking slow, I have this bought up every time I walk with someone, I get, your too slow. I don't care tho, it is what it is. Even tho you've took that long to get to the pharmacy, its still an achievement. Its good your neighbour supported you.
    If your parents want to pay private, take them up on their offer, a private Dr might look closely at your problems. Also will put their minds at ease. Then you can all move forward. 
    I do hope you get pain relief that suits you better, I use heat also when I've done too much. 

  • Karen7788
    Karen7788 Scope Member Posts: 598 Pioneering
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    Hi @HanzRolo, I can totally emphasise with you regarding your situation. I have Rheumatoid Arthritis and Osteoporosis and some of my symptoms are similar to yours. I understand how each day can be a struggle and that if you do things on a good day you’re in absolute agony the day after. I’d take up your parents offer and make an appointment with a private Consultant so that they can look into other musculoskeletal/immunology conditions. It can be a bit of a shock to the system when you get a correct diagnosis, but then you can start on the right treatment for you. I used to have really low moods but since I’ve been on the correct treatment they have lessoned. I don’t go down the painkiller route as my medication is all geared around reducing flare ups. 
    I wish you all the best. 
  • HanzRolo
    HanzRolo Community member Posts: 60 Courageous
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    Sandy_123 said:
    Hi @HanzRolo you are not alone, I too suffer with my spine. I'm restricted to what I can do, also pushing through the pain. I sympathise with the walking slow, I have this bought up every time I walk with someone, I get, your too slow. I don't care tho, it is what it is. Even tho you've took that long to get to the pharmacy, its still an achievement. Its good your neighbour supported you.
    If your parents want to pay private, take them up on their offer, a private Dr might look closely at your problems. Also will put their minds at ease. Then you can all move forward. 
    I do hope you get pain relief that suits you better, I use heat also when I've done too much. 

    Thank you.  I think the bonus we have of walking slowly is you taken in your environment a lot more than if you're rushing around trying to get from A to B as quickly as possible.  There's a lot of beautiful nature between my house and the pharmacy in people's gardens.  I do have one friend who lives fairly locally with different chronic pain who walks slowly too, but not as slow as me.  We joke about having a race.

    Yeah I think I might have to take them up on it because nothing is moving forwards in the way I'd hoped.  I'm still not 100% convinced but they aren't at all.  They kept suggesting a chiropractor which everyone in the NHS who has seen me has said "no!"  So I convinced mum that instead of paying for a chiropractor to pay for my Tai Chi classes instead.
  • HanzRolo
    HanzRolo Community member Posts: 60 Courageous
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    Karen7788 said:
    Hi @HanzRolo, I can totally emphasise with you regarding your situation. I have Rheumatoid Arthritis and Osteoporosis and some of my symptoms are similar to yours. I understand how each day can be a struggle and that if you do things on a good day you’re in absolute agony the day after. I’d take up your parents offer and make an appointment with a private Consultant so that they can look into other musculoskeletal/immunology conditions. It can be a bit of a shock to the system when you get a correct diagnosis, but then you can start on the right treatment for you. I used to have really low moods but since I’ve been on the correct treatment they have lessoned. I don’t go down the painkiller route as my medication is all geared around reducing flare ups. 
    I wish you all the best. 
    Thank you.  I'm glad that you have managed to get the correct treatment and are moving forward in that sense.  I totally understand the shock to the system with the correct diagnosis.  For years I was told I was lazy and/or a daydreamer even when I was trying my hardest, so at 25 I went back into education and was diagnosed as dyslexic.  The relief!  I think I ended up having a good sob about that because I thought I was just incompetent, but it turned out if I had the right support I was able to get through college with three A's out of three courses and a first in my dissertation when I was at university.

    I am going to take up my parents offer.  You and @Sandy_123 have convinced me it's probably my best move now to see if it is something else that is going on.  It took long enough for the physio to confirm with me that it was chronic pain I have to manage rather than something that would go away.  The GPs avoided telling me that was the case which was REALLY frustrating.  I'd rather know the truth so I can prepare myself for the next steps forward.

    I'm on Pregabalin 300mg.  One of my fibro friends said she decided to come off of it and she said the withdrawal was awful.  I'm thinking it might be an idea to look at changing things.  I had wanted to have children with my partner...  I'm 38 on Sunday and with the high meds I'm on, it's looking less and less likely that we will have family other than furbabies.   Our cat has definitely been my support buddy.  I don't think I'd have coped the last few years without her giving me cuddles. 
  • Karen7788
    Karen7788 Scope Member Posts: 598 Pioneering
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    Hi @HanzRolo,
    I hope I’ve been of some help to you. Yes you’re right about cats, I have two myself also two dogs. They can sense when you’re in pain and not having a good day, they bring us lots of joy. 
    I hope you get a proper diagnosis which will help you to more forward with your life and hopefully start on a suitable treatment.
    Best wishes
  • Sandy_123
    Sandy_123 Scope Member Posts: 52,535 Disability Gamechanger
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    @HanzRolo do let us know how you get on with the private Dr. If you don't mind. 
  • HanzRolo
    HanzRolo Community member Posts: 60 Courageous
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    I'll keep you posted on what happens.  Thank you all!  It's nice knowing that there are other people out there in a similar boat.

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    We will look forward to hearing what happens @HanzRolo. Please don't hesitate to reach out in the meantime if we can do anything to support you. 

    We are all here for you and as you say, other people are out here in a similar boat so they can relate and support from their own boat too  :)
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    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • Tori_Scope
    Tori_Scope Scope Posts: 12,504 Disability Gamechanger
    edited July 2022
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    I'm glad the community has been able to support you @HanzRolo :) I just wanted to check in with you to see how you've been doing. How have things been?
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