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GP isn't taking me seriously

andrea76andrea76 Member Posts: 15 Connected
edited March 2018 in Disabled people
Hi all! 

Ive joined here as I really don’t know where to go next, I’m hoping for some advice. 
After years of constant pain all over, numbness, clumsiness, dizziness & fatigue I’ve been diagnosed with DDD & osteoarthritis. I’m having nerve blocks next week then hopefully surgery in 2 months.
Apart from the above I really feel like something else is lurking under the surface, I know my body and feel like I’m 82 not 42, I’m constantly sore to the touch, exhaustion is ever present but my gp has done bloods and said there’s no inflammatory markers?! Has anyone any advice please as where to go from here as I’m so fed up and it’s getting me down now. TIA XX

Replies

  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello Andrea @andrea76 and welcome to the community. My profound apologies for us not having been able to get back to you sooner.
    I am very sorry to hear about your condition and that it is getting you down, which is perfectly understandable :( I hope very much that we can find ways to help you.

    I am no authority on these things and as such I am asking the following question very guardedly: but has anybody made reference at all to fibromyalgia? It is principally your 'sore to the touch' comment which makes me wonder. 

    Perhaps you could respond to this asap and allow me to get back to you?

    Very warmest best wishes to you,
    Richard
  • andrea76andrea76 Member Posts: 15 Connected
    Hi JennysDad

    thanks for your reply. 
    No, no one has ever mentioned this, I’ve had “oh well, being a working mum is hard at times!” 
    This is all I get from my gp, I don’t feel I’m being taken seriously. We went out for lunch yesterday as it was Mother’s Day & this morning I’m struggling so much, it would be easier to list what isn’t hurting today! The simplest of things can completely wipe me out
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @andrea76, and welcome to the community!

    Thanks for sharing this with us, it sounds like you're having a really frustrating time trying to find answers. I've been in a similar situation myself in the past and know how disheartening it can be.

    Whilst we cannot give medical advice over the community, one thing that could be worth doing is seeing a different GP and getting a second opinion: you are always entitled to do this, and it could be that somebody looking at your circumstances with fresh eyes could really be beneficial and help to move things forward. What do you think? 
  • charlenecharlene Member Posts: 555 Pioneering
    Hello, I have fibromyalgia. My symptoms are widespread pain, fatigue, memory loss, problems going up and downstairs.  Just recently I found small lumps in both legs just above my knees (fibre lumps). Difficulties pronouncing words and during conversation losing words or forgetting what I want to say. There other symptoms, I hope this has helped you.
    When the going gets tough, the tough get going.
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  • andrea76andrea76 Member Posts: 15 Connected
    Thank you all so much for your replies, I too forget half way through a conversation what I’m talking about but I put this & other symptoms down to my depression? I’ve been on meds for years for this but the symptoms I have been having the last 12 months are completely different. I see another GP at my practice next Monday so fingers crossed I have a bit more luck! 
    Thanks guys 
  • butterfliesbutterflies Member Posts: 29 Courageous
    Hi Andrea

    Have you had your thyroid levels checked or your B12 levels checked.
    If you do not want to face your GP you can have blood tests done online via Medichecks or Blue Horizon which saves being fobbed off by NHS!
     
    Being low in Magnesium can cause really awful symptoms of all kind and this can be taken as Epsom Salts baths(or small teaspoon in a drink of juice you can buy food grade) or Magnesium Oil Spray.

    It's a process of elimination really to see what works for you.

    When Life Gives You Lemons Make Lemonade
  • charlenecharlene Member Posts: 555 Pioneering
    Hi Andrea, depression can also be part of fibromyalgia, certainly one of my symptoms.
    When the going gets tough, the tough get going.
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello again, @andrea76 and good to hear back from you. @PippaScope is spot-on here - try to get that second opinion. Hate to say it, but my understanding is that GPs are often 'lazy' when it comes to women's pain.
    Warmest best wishes to you,
    Richard
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  • andrea76andrea76 Member Posts: 15 Connected
    Thyroid, b12, vitamin d, had almost everything checked, the Magnesium sounds interesting though?! I will pick some up on my way home from work. How I’m managing to hold down my job I’ll never know. I’m a clinic support worker for the nhs so it’s not exactly a “I’m just going to take 5 mins to rest” job! 
    I really feel like giving up lately, feel like nobody understands, if I had a cast on my leg then people could see what was wrong
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  • butterfliesbutterflies Member Posts: 29 Courageous
    Hahaha! :D  @Victoriad  @andrea76
    My grandma swore by Andrews Liver Salts and I used to tell her that joke!!!

    I got the book the Magnesium Miracle a few years ago.
    After a lot of research....
    I'm also taking L-tryptophan(an essential amino acid) for depression(due to chronic illness) and Holy Basil capsules... an Ayurvedic herb which really helps with stress and sleep.
    I don't know where I would be if I had not starting taking these.  I have been on them 6-9months and the difference is really noticeable.

    I hope you manage to find some relief from your symptoms soon @andrea76 :)



    When Life Gives You Lemons Make Lemonade
  • andrea76andrea76 Member Posts: 15 Connected
    Thank you. 
    I’m currently taking sertraline for depression, gabapentin 300mg x3 three times a day and tramadol x 8 a day. Obviously driving and working do not allow me to take these doses, it would be impossible hence me not getting the adequate pain relief for the problems I’m experiencing. I informed my gp last month of this. 
  • BarbiesnemesisBarbiesnemesis Member Posts: 86 Pioneering
    My doctors told me my thyroid levels were fine - it turned out that it was on the borderline of ok/not ok. I found out via my psychiatrist and he put me on thyroxine. 

  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Hi Andrea

    Have you asked your GP to refer you to a specialist?
  • andrea76andrea76 Member Posts: 15 Connected
    Some gp’s are a joke aren’t they? 
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Yes, afraid so. Though I've been quite lucky with my GP practice.
  • andrea76andrea76 Member Posts: 15 Connected
    Matilda said:
    Hi Andrea

    Have you asked your GP to refer you to a specialist?
    Yes matilda
    i was told if my bloods flag anything up then she’d refer me to rheumatology, when they came back within normal range she said there’s no point as there’s obviously nothing wrong  :s 
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hi Andrea @andrea76
    Sounds to me like you need to DEMAND that second opinion.
    So very sorry you're having such a hard time.
    Warmest best wishes,
    Richard
  • andrea76andrea76 Member Posts: 15 Connected
    JennysDad said:
    Hi Andrea @andrea76
    Sounds to me like you need to DEMAND that second opinion.
    So very sorry you're having such a hard time.
    Warmest best wishes,
    Richard
    Thanks Richard
    i will, I’m getting at stressed & my anxiety is through the roof with it all! On the plus side I’ve got my appointment for my nerve injections for my herniated discs, hopefully will get some relief from them. On another note, if I take anymore time off then I’m at danger of losing my job, the nhs isn’t so caring when it comes to its staff! It has been suggested by HR that I take some time out unpaid, which I can’t afford to do. I’m just wondering if anyone else has been in this situation? 
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hi Andrea,
    Hopefully others will respond to that question - you've obviously made some useful contacts here.
    This conversation might be of interest to you; https://community.scope.org.uk/discussion/38473/nhs-work-disability-employment-standard Surprisingly invisible on the list of links on my screen there is also this, 'Ask an employment advisor' https://community.scope.org.uk/categories/ask-an-employment-advisor and the top thread in that link will take you straight to the advisors, it seems.
    Still here, still listening,
    Richard
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  • andrea76andrea76 Member Posts: 15 Connected
    Victoriad said:
    Hi @andrea76
    Ive been in a similar situation but with a local council who employed me as a teacher.

    Same principles probably apply ......which is to get the Occupational Therapist and hospital consultant who is treating you ( leave out the GP if they are a waste of space) and your workplace involved and to start liaising with your workplace line manager about a phased return to work.

    Just for a belt and braces approach I would involve your Union if you are a member, or failing this get a quick consultation from an Employment Lawyer to see where precisely you stand in this situation.

    If this phased return to work fails and a redeployment to another post us out of the question, then you have in place the building blocks for a health retirement package.

    Hope this helps.



    Thank you so much for this information. I’m in work at the moment, I’ve no other choice! I literally drag myself in every day, I have reduced my hours but even that hasn’t helped. I come home from work so upset & sore, I climb into bed and pray for sleep & rest. It’s affecting my family life, I struggle to stay awake to spend time with our daughter & i’m Not able to walk my dog anymore. 
    Im not sure that redeployment would work given the nature of my employer but it is certainly something I would be interested in. Giving up for me isn’t an option, we simply couldn’t afford it. 
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    Change gp. Mine is fantastic, it's only after changing that I realised that! 

    As for forgetting things. 
    I can forget what I was talking about and start a brand new conversation until my brain remembers the first one then i slot that back in.
    It's only the blank face of the person I'm talking to that notes that's some skill you have there! They can't listen to two :)

    Do not follow me, I don't know where I am going.
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  • andrea76andrea76 Member Posts: 15 Connected
    I will update you all when I’ve seen the GP next week, I’m seeing one of the partners of the practice, an appointment with her is as rare as rocking horse poop lol so fingers crossed I get started on the right path. 
    Thanks again guys 
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    I changed gp practice as after an overdose my gp said to sort myself out and get out more.
    i was shocked and disgusted.
    The doctor I have now is great and nothing is a problem, she is my lifeline 
  • andrea76andrea76 Member Posts: 15 Connected
    susan48 said:
    I changed gp practice as after an overdose my gp said to sort myself out and get out more.
    i was shocked and disgusted.
    The doctor I have now is great and nothing is a problem, she is my lifeline 
    Omg!! How awful! Glad you now have the right support from your GP, some really have no empathy or understanding of people’s needs! 
    Take care 
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  • maid08maid08 Member Posts: 307 Member
    Victoriad said:
    Yes another GP that’s about as much use as a chocolate watch!
    Why these people ever join the medical profession is a mystery to me!

    Yes when I approached mine initially, regarding depression he advised I see a lawyer to sort out my problems.

    No prescription.......then a couple of months later I was sectioned on a mental health ward.........you could not make it up.


    umm just befor i had a complete breakdown i was told to grow up by a docter ?  some strange docters about 

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  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    Doctors are not infallible, of course.  A long time ago now, but I once had a consultation with a GP who chain smoked all the way through!
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    This had just reminded me years back that i had someone ask me if i was dropped on my head as a baby. Needless to say i refused to revisit!!
    Do not follow me, I don't know where I am going.
  • maid08maid08 Member Posts: 307 Member
    Victoriad said:
    I mean how could I take him seriously after that?

    you cant  i think a lot of it is to give you time within youerself to question why youer brain has gone of track  docs were useless in my view and i sorted myself out were i had peace ??in hospital 

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  • andrea76andrea76 Member Posts: 15 Connected
    Victoriad said:
    Hello @maid08
    Its amazing how a stay on a hospital ward can help
    God no lol, it would be hell for me, I work there so to escape is my peace haha x
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    I would starve have you seen the food portions!
    I would be ringing out for pizza, assuming they have wifi. 
    Do not follow me, I don't know where I am going.
  • deb74deb74 Member Posts: 754 Pioneering
    i have ME and went to my dr twice with my symptoms and he told me it was all in my head! i have now changed drs!
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  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    I have always had a sense of humour.
    Out of my mind back in five minutes is comment I like.
    Do not follow me, I don't know where I am going.
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  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    Victoriad,
    i know I shouldn’t but that story made me laugh, you couldn’t make that up hahaha

    x
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  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    Victoriad said:
    Yes indeedy @susan48

    Strange but true..........life us like a box of chocolates......you just don’t know what’s going to come out next.

    I do as I only buy maltesers. All the same. 
    Do not follow me, I don't know where I am going.
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    Whistles,
    no surprises with maltesers
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  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    It's not a case of not wanting to go. I was forgetting to go and they have now taken me off the list. 

    Definately don't want to be 21 again. Misdiagnosis and wrong  meds, wrong support. Yuk.
    Do not follow me, I don't know where I am going.
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  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    I was 15 when I had my accident. Mentally I had to get to know the new me. The new me was at that time rebellious, angry and self destructive. I felt robbed.
    Do not follow me, I don't know where I am going.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
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  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    My humour has kept me going. It's who i am now. 
     :) 
    Do not follow me, I don't know where I am going.
  • andrea76andrea76 Member Posts: 15 Connected
    Hey guys

    well here I am with my update. Today was a good day, I felt so much more positive after a rubbish few day symptom wise. 
    New symptoms include double vision, like I can’t focus after a few vodka’s lol, worsening of my twitches and spasms and the fatigue has hit a new level, just putting on my socks is a mammoth effort. 
    Anyway, I went to my gp appointment, a bit anxious of the “here we go, let’s repeat myself for the hundredth time!” But I needn’t have worried. 
    She was great, she sat & listened to me blurt our everything that’s frustrated me these last couple of years and agreed looking back over my notes that something is definitely wrong. After an examination I finally got my referral, plus 2 MRI scans, the upshot is she believes it’s 1 of 2 things. Either fibromyalgia or early MS. Either way to be taken seriously and to start this path is such a relief, all I want from this is a better quality of life for myself to give my family the time and fun they deserve and to get the right support, be that an electric tin opener or new door handles, will be a great help. 
    I shall keep you all updated if my progress and thank you to each and every one of you, knowing you are here is giving me the courage to pursue this! 
    Much love 

    Andrea x
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    Hi Andrea76,
    glad you’v finally getting answers, about time too.

    first step to the help you need

    good luck
    Susan
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