If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Newbie!

lydiarose89lydiarose89 Posts: 5Member Listener
Hi everyone my names Lydia, 30 years old next month. My fibromyalgia was diagnosed March 7th 2016. I’ve had two children since then. 6 weeks ago I had a horrendously traumatic labor and I’ve been in, I can’t even say flare up because this is way worse, ever since. I’m in tears with this pain. It’s the worst it has ever been. I’m in strong cocodamol and it’s not touching the pain even the slightest. I can’t use my hands properly I can’t walk straight if at all. I can’t sleep because of the pain but I am so so tired. I’m lucky my baby sleeps well but I still can’t get on top of this pain. I claimed PIP in 2016 and was rejected. I didn’t appeal and forced myself back into work. Which I’m a cleaner and a house keeper. I had my first son and we barely got by on my partners income and some tax credits. When he was 8 months old i forced myself back to work again. But took on 3 jobs this time. I ended up totally crippled and had appointments with nerve specialists because it looked like carpal tunnel. I was told to wear wrist splints to stop the numbness and tingling because the nerve tests showed my nerves were okay it was just the FMS making me feel the symptoms of it. I tried to carry on working but physically couldn’t do the job and I left. I then fell pregnant (unplanned) with my second son. The pregnancy was stressful thanks to the NHS I was lied to and let down. I had a big baby who was stuck. I ended up with a second degree tear and lost a lot of blood. I can no longer walk properly thanks to the macroberts manoeuvre where my pelvis was prised aprt to help baby out. I have many MANY stitches. Now I feel the need to claim PIP again because l cannot do my job properly anymore. I just don’t have the strength or power or stamina to clean my own let alone someone else’s or offices. 
I have my last 4 years medical history thanks to a SARS form I did. But only if my diagnoses. I am happy to ask gp for an updated letter for evidence but what would it need to say? They agree I can’t do this physical work but how should they write it? 
Any advice is much appreciated and welcomes. Thankyou!!

Replies

  • poppy123456poppy123456 Posts: 12,678Community champion Disability Gamechanger
    HI,

    I'm sorry to hear that but congratulations on your new baby.

    PIP isn't about a diagnosis, it's how those conditions affect your ability to carry out daily activities based on the PIP descriptors. It's also not about not being able to work. People claim PIP and work.

    Evidence should state how your conditions affect you against the PIP descriptors and a GP will very rarely know this. A GP only usually knows the basics like medication, diagnosis and what appointments you've had.

    Have you been to the pain clinic and seen a consultant? Sometimes letter from pain clinics can be useful, if they go into enough of detail.  Do you have adaptions at home that were installed through an Occupational Therapist? If you do then when you had the assessment you should have been given a report, this will help as evidence.

    When you receive those forms you should fill them out with as much information as possible about how your conditions affect you. Adding 2-3 real life examples of what happened the last time you attempted that activity for each descriptor that applies to you. Use extra paper if you have to because there's never enough of room on those forms. Make sure you add your name and NI number to everything you send.

    If you don't have enough time to return the form, ring DWP to request an extra 14 days. Expect a face to face assessment because most people have them.
  • thespicemanthespiceman Posts: 4,649Community champion Disability Gamechanger
    Hello @lydiarose89 Pleased to meet you welcome.

    Thank you for joining and sharing.

    Congratulations on the birth of your baby. Sorry to hear your in pain.

    I am one of the team of community champions.  We guide, advise and help new members who join the forum.

    Please if I can suggest look at the booklet that comes with PIP form.

    I would also look at our website and CAB one can be useful to know . Information, advice and guidance.

    Please if we can help with anything further . Please ask. Some one will know a member of our team or a member of our community.

    Please take care.

    @thespiceman
  • Imogen_SteeleImogen_Steele Posts: 38Community champion Courageous
    Hello and welcome! Sorry to hear that you are struggling at the moment and congratulations on the birth of your second son! This is a great place to find support and advice. How are you feeling today? 
  • Adrian_ScopeAdrian_Scope Posts: 2,936Administrator Scope community team
    Hi @lydiarose89 and a warm welcome to the community. It's great to have you with us. I think Poppy's answered your questions, but if there's anything else you need support with, please don't hesitate to ask. :smile:
    Senior Online Community Officer
    Scope
  • lydiarose89lydiarose89 Posts: 5Member Listener
    Thankyou everyone!! I appreciate the prompt responses and advice. I shall keep all updated on my progress. No idea this community existed it popped up during a google search about PIP and Fibromyalgia. So glad I found it!
  • lydiarose89lydiarose89 Posts: 5Member Listener
    Hello and welcome! Sorry to hear that you are struggling at the moment and congratulations on the birth of your second son! This is a great place to find support and advice. How are you feeling today? 
    Hi! I’m feeling a little more positive however my pain has not subsided in the slightest. I’m trying to reach out more. I have awful electric shock pains going up my spine started above the coccyx. It started while pregnant I assumed the baby was pressing on a nerve however it’s continued. I’m hoping my disc bulge hasn’t worsened!!

    How are you? 
  • chiariedschiarieds Posts: 37Member Pioneering
    edited September 11
    Hi, @lydiarose89 . I am so sorry for the additional pain you are going through since the birth of your 2nd son. I looked up McRobert's manoeuvre & appreciate why. Our son was a 'brow' presentation which resulted in the separation of my symphysis pubis (the joint you are experiencing pain with). I didn't realise at the time, but both my midwife & husband heard a 'crack' during his delivery. My midwife said altho' it wasn't rare, it didn't happen often.

    The pain later when I got back home I can only describe as sheer agony. Walking, lifting, climbing stairs....everything, & I thought I was pretty good at dealing with pain. Perhaps you might ask your GP to refer you for physiotherapy, which should help. You will walk properly again but it may take time.

    For now try sleeping on your side, if you can, with a pillow between your legs which may help. And, however difficult it may feel, try to have a good posture. It's better to walk slowly with a good posture, than get around as best you can.

    I'm a qualified physio, but haven't worked as such since the late 1970's; I think I have also experienced the awful pain you are going through. This is just my personal experience, &, as I obviously can't see your medical notes, please view this as general guidance which I hope may help.

    Regarding your PIP claim, I can only add as you have fibromyalgia & consequent pain, the DWP's 'Advice for Decision Making Guide' mentions, 'consideration of symptoms such as pain, discomfort, breathlessness, fatigue & anxiety.' So when filling out the form mention if doing an activity is painful; whether you're in pain afterwards; where you experience considerable fatigue during or after an activity, etc.

    Also, IMHO, your GP may be able to help with your PIP claim, dependent on their knowledge of fibromyalgia; how well they know you, & the impact it has on your life. Otherwise it may be better to send photocopies of Consultant's letters if you feel they better describe how your condition affects you, rather than just mentioning a diagnosis.

  • Imogen_SteeleImogen_Steele Posts: 38Community champion Courageous
    Hello and welcome! Sorry to hear that you are struggling at the moment and congratulations on the birth of your second son! This is a great place to find support and advice. How are you feeling today? 
    Hi! I’m feeling a little more positive however my pain has not subsided in the slightest. I’m trying to reach out more. I have awful electric shock pains going up my spine started above the coccyx. It started while pregnant I assumed the baby was pressing on a nerve however it’s continued. I’m hoping my disc bulge hasn’t worsened!!

    How are you? 
    Hi, I’m glad you’re feeling more positive! I’m sorry your pain has not decreased. Have you seen your doctor in case it is your disc? I’m okay thanks. I am waiting for new treatment so currently  in a bit of pain. Thanks for asking.
  • lydiarose89lydiarose89 Posts: 5Member Listener
    chiarieds said:
    Hi, @lydiarose89 . I am so sorry for the additional pain you are going through since the birth of your 2nd son. I looked up McRobert's manoeuvre & appreciate why. Our son was a 'brow' presentation which resulted in the separation of my symphysis pubis (the joint you are experiencing pain with). I didn't realise at the time, but both my midwife & husband heard a 'crack' during his delivery. My midwife said altho' it wasn't rare, it didn't happen often.

    The pain later when I got back home I can only describe as sheer agony. Walking, lifting, climbing stairs....everything, & I thought I was pretty good at dealing with pain. Perhaps you might ask your GP to refer you for physiotherapy, which should help. You will walk properly again but it may take time.

    For now try sleeping on your side, if you can, with a pillow between your legs which may help. And, however difficult it may feel, try to have a good posture. It's better to walk slowly with a good posture, than get around as best you can.

    I'm a qualified physio, but haven't worked as such since the late 1970's; I think I have also experienced the awful pain you are going through. This is just my personal experience, &, as I obviously can't see your medical notes, please view this as general guidance which I hope may help.

    Regarding your PIP claim, I can only add as you have fibromyalgia & consequent pain, the DWP's 'Advice for Decision Making Guide' mentions, 'consideration of symptoms such as pain, discomfort, breathlessness, fatigue & anxiety.' So when filling out the form mention if doing an activity is painful; whether you're in pain afterwards; where you experience considerable fatigue during or after an activity, etc.

    Also, IMHO, your GP may be able to help with your PIP claim, dependent on their knowledge of fibromyalgia; how well they know you, & the impact it has on your life. Otherwise it may be better to send photocopies of Consultant's letters if you feel they better describe how your condition affects you, rather than just mentioning a diagnosis.


  • lydiarose89lydiarose89 Posts: 5Member Listener
    @chiarieds Honestly, Thankyou so much for that response. And thank you for looking up the manoeuvre they used. I’ve had it twice in the last two years now and noticed my feet now turn it when I walk putting strain on my knees. My right leg is more turned in and I’ve since gotten blisters from new trainers on that foot only. Which is very odd. I have a GP app Tuesday and honestly I cannot wait. Not that I’m seeing my personal GP however, it’s impossible to get an app with him as he only works 2 days a week and honestly is not a very nice nor compassionate man. I’ve requested a change in Gp a few times they always leave after a year or less. My local docs is a joke quite frankly it’s an absolute shambles. Such a shame and their walk in system is totally flawed. You can never get pre bookablee for at least 6 to 8 weeks. 
  • chiariedschiarieds Posts: 37Member Pioneering
    Hi @lydiarose89. I just wanted you to know that I understand the pain you're going through; I think it's the worst I've ever experienced. If my son had been our first child I'm not sure I would have had others....yet you've been through this twice!

    I hope you're able to discuss your problems with an understanding GP who will work with you....it can make such an enormous difference. Please let us know how you get on with your appointment.

    As far as going through the PIP system, I was 'migrating' from Disability Living Allowance to this, & my GP offered to write a supporting letter. This was most helpful as Consultants had given up on me for a variety of reasons, so I only had my own words & those of my GP.

    I hope you get the help you need; I will be thinking of you. 

Sign in or join us to comment.