Invisible impairments
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I knoww i dontlook tired!

[Deleted User][Deleted User] Posts: 118 Listener
edited December 2018 in Invisible impairments
I have fibromyalgia/ME..pernicious anaemia just having tests now for neuropathy. i also have a neck injury that has got unbearable aparently it was whiplash injury and my neck bones never made it back to the right position.non alcoholic fatty liver disease. diverticular disease.Complex ptsd. anxiety. depression and panic attacks.

 I have been having 3 yearly mri as there is a strong family link with subacneroid bleeds mum and step dad died and two sisters had and survived. im supposed to have 3 yearly checks and changes is blood vessels were detected last time.

I use a mobility scooter and struggle mentally too as well as.exaustion when i go out. usually gp refered me for specialist support out of area for my Cpsd since local service have not got the expertise. i was.put on the list .

unfortunetly my health worsened last year and was offered 4 sessions with a psychologist which i grabbed.she was part of local services she told me to lower my expectations and remended me it was only for the issues i was having then and not cptsd therapy.

unfortuetly these sessions were used against me and the commisioner said i couldnt have the funding for the maudsly since i through local services. Feeel so let down . feel like im being backed into a corner as i am not. betterbut worce.

Also feel like im getting nowhere baatling to improve my physical  health. i dont even want to be wasting.mine or my gp time as i feel he doest get it and maybe thinks im a hyperchondriac or has simply switched off..he has started to stand up to get me out the door quick and i feel a burden. i am now without mental health support and i desperately need it .

.i would pay but as you know DWP are not helping ...i am at tribuneral stage but know that couldbe a year off. i seriously believe i am not strong enough to keep fighting when my life is so seriously impacted by my conditions. Im feel exausted and ground into the floor.


  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Im sorry to hear you are having such a difficult time @vickyanne

    It could be worth you speaking to the Samaritans on 116 123 or by email [email protected] - they are there to listen about a whole range of issues and are experienced in giving support.

    MIND also have lots of information and self help tips that might possible help you.

    Do you have any support from family and friends? You sound so low and I understand that facing the battle of tribunal can feel so overwhelming, it can help to be able to talk to someone close to you about it all.

    You say you are exhausted, has your GP checked if there is a physical reason for this (aside from your conditions), vitamin deficiency for example?  It is also really important for you to try and take as good care of yourself as possible, dehydration is so overlooked and can make you feel terrible, so do try and keep your water intake up.

    We are here and we are listening, let us know if we can do anything to help.  
    Senior online community officer
  • XenasMumXenasMum Member Posts: 27 Connected
    @vickyanne have you tried any supplements? I've got fybro too and take multivitamins, vitamin C complex, glucosamine and magnesium. I know it's quite a few but the magnesium and Vit C really help with fybro 
    If your gp is dismissive change to another surgery there are some support services out there but it sounds like this guy is only making matters worse which you certainly don't need. Good luck sweetie xx
  • [Deleted User][Deleted User] Posts: 118 Listener
    Thankyou for both for your comments. I am so very low Sam i ring the samaritans  a lot as everything is so difficult does help me off load a bit but of course they can only listen which i am very greatful for but it all wells up again. I dont have any family support and my grown up daughters i estranged from youngest walked away saying fibro was all in my head after i was diagnosed ( both my daughters are under tthe influence of their wealthy father who was only interesting in seeing them when he choose when they were young) I dont have lots of friends due to my health and one that i trust has ME and It not appropriate to put on her how i am feeling really deep down. To be honest not sure what tests my GP does although i know i have lots of blood tests. I know i am borderline anaemic too but dont take suppliments only magnesium. One issue ive managed to sort is eating better now as i have been struggling so much to make meals but now worked out if i have frozen meals i dont have to rely on snacks and cereal etc
    Xenas mum i will try vit c GP is very quiet uncommunitive although he has done the referals to get me the specialist Cptsd support but the local mental health team made out to the commissioner who finances out of area support that i didnt need itas they could help me even though they made it clear they couldnt to me! my Gp hasnt fought this even though he knows the situation having to do it via the local MP. I really feel i am being treated like a hypochondriac and being managed and given the nods and smiles etc but when i say things like i noticed the heat makes me worse ( in the summer) he said no its only cold that affects your fibro .or in the beggining of my condition he said  you cant have ME or you wouldnt be able to get to the surgery...also when i notice some muscle relaxers made my ptsd worse he said no it wasnt those tablets!! so frustrated with everything now and i feel he doesnt hear me ....
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @vickyanne, I'm so sorry to hear about your experiences. It can be really frustrating when you're trying to seek help for invisible conditions and you don't feel heard. I wonder if you've tried seeking a second opinion from a different GP?

    There are ME/CFS and specialist fatigue clinics around the UK. You usually need to have displayed symptoms for at least 4 months for a referral, and before any referral you would have a full range of blood-work to rule out any other potential causes. Might be something worth speaking to a new GP about! Please do keep us updated, and I really hope you find the answers you're looking for.
  • [Deleted User][Deleted User] Posts: 118 Listener
    Hi @Pippa_Scope
    Thanks for that information, Pippa although Bit of a sore point with me the ME/CFS specialist fatigue clinics...I was diagnosed and referred by my GP and I was declined specialist support as due to my fatigue i had put weight on and reached a size 20 . Apparently the clinics are free to set their own criteria for who cant be supported by them! BMI being one of them. I was so upset about this and i argued that  ME can be a problem for size 20 as much as it can a size 10 but it fell on deaf ears. Sad really because i know others who were denied support because of this understandable weight gain. I also wonder how they can omit people like this when they dont understand the pathology of ME. Also could the "specialist" not gain insight into this condition if they didnt cherry pick their patients. 
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Oh I'm so sorry to hear that @vickyanne, how frustrating for you! It's such a shame how services can vary so much and I'm truly sorry to hear your needs weren't met.

    Do consider seeing a different GP for a second opinion if things don't improve, and do keep us updated. I really hope you find the support you need, and we'll advise where we can.
  • [Deleted User][Deleted User] Posts: 118 Listener
    oh Pippa I really appriciate that. I have sort of given up expecting undeerstanding from the DWP and my GP and mental health services to be honest I also have Complex ptsd . I feel I use up too much energy trying with my GP and the practice has had a terrible attitude regarding my condition....a GP did say at one point I didnt look ill! i complained to thepractice manager and i was told to stick with the one GP i have now ...I feel stuck as i am awaiting tribuneral too. I wrote my Gp a letter as i felt so unheard and managed not helped...I did say I felt let down by a system that i am struggling with and not being heard. i was polite and generous about what was working ie he does refer me for my Cptsd (out of area) but the local mental health blocked the finance and now my GP ask me if I would go to Local mental health support instead even though they are not trained in supporting Cptsd! and they blocked specialist support !....i can see me leaving the practice and dont want to attend the surgery anymore
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    You're more than welcome, @vickyanne. I know it can be so frustrating but in a completely personal capacity, it took me 5 different GPs myself before I found one who understood my condition and needs. Keep trying and don't give up! 
  • [Deleted User][Deleted User] Posts: 118 Listener
    Pippa again thankyou ....I feel empowered to find a new GP ...Its a shame as the reception staff are lovely and i really get on with the nurses there ...i have B12 injections 3 monthly. However I cant carry on like this as my relationship with my GP is void and stoic :(
  • XenasMumXenasMum Member Posts: 27 Connected
    @vickyanne my heart bleeds for you, I've got PTSD because of my childhood so have an idea of what it's like for you. Sounds like you really need a new GP so I hope you have success in finding one. Do you take antidepressants? If not you do have St John's Wort although  you will have to check that it doesn't interfere with any other meds. Please let us know how you get on xxx 
  • [Deleted User][Deleted User] Posts: 118 Listener
    Thanks for your understanding it is a real living nightmare at times isnt it...when i am triggered and i know you will totally get that its like i am programmed to enter through a revolving dark door when triggered in a way most would not comprehend due to triggers that involve normal day to day experiences. I wish others could understand what we go through ..not for sympathy but for help support and unconditional non judgement.. That would help if medical staff such as GPs . Psychiatrists. mental health support could realise what we suffer but i guess itis one of those things that you have to experience to know what it is like ...How do you explain a nightmare to someoe who doesnt even dream ? I wish you peace and understanding with your journey x
  • [Deleted User][Deleted User] Posts: 118 Listener
    Ps i have been taking anti depressants on and off since around 30 years old ...the last time i weaned myself off of them i ended up in such a mess i was sent to A&E as my blood pressure was so irratic! i was in a panic attack for hours! never again will i stop them as my body goes haywire now without them....which is sad as im sure if i had help instead of meds maybe i would be healthier now 56! I also get diazepam which i am very careful to only take when panic becomes too much as i dont want to be addicted to them either .
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