Feel let down by the NHS

Hi everyone sorry to come on here and moan as I know you all have your own problems and many will be worse than mine!!!

Basically my story is this; 6 months after my daughter was born (3yrs ago) my shoulder joint went completely, the pain was unbearable and I literally couldn't move my arm to even tie my hair up. This lasted months, had physio twice a week but didn't help at all so was given a steroid Injection which helped for a few months although shoulder was never the same. 6 months after that my shoulder went again so back t physio but then my other shoulder went and then they started alternating - so I went back to the docs and found a good doctors (very hard to come by) and I asked for another steroid injection but he said at age 30 I shouldn't be having this much pain in both shoulders so he did some bloods and this is how my SLE journey started (had never heard of it before) so the first set of bloods showed positive for the antibodies and the result was extremely high for what it should be (or too low I can never remember which is which :)) so he referred me to a rheumatologist, now by the time I got to see him my pain was having a break and I wasn't suffering the way I usually do so he basically made me feel it was in my head and ordered more bloods which he told me would come back normal. However they didn't and again were way below average so that and an eye test as my eyes give me so much bother plus the fact that my joints in my fingers and toes were now hurting, my doc was convinced it was SLE. This was a YEAR AGO and I am still waiting on an appointment with my rheumo to confirm this, so in that year SO much has changed. The pain used to come and go now the finger pain and toe pain is here almost every day with knee back and shoulder pain coming in waves.

If I stand for too long I literally can't walk my knees swell up and I am in agony.

In the morning I wake up In two ways, I am either so exhausted and in agony or I am wide awake but still in pain so takes me 30mins to leave the bed then I walk like a 90yr old for half an hr! I have a 3yr old so this is no good'.

My periods are almost non existent (nt sure if this is related but can't think what else) and im trying to expand my family and have been for 2yrs!

I am not fat but the heaviest i have been, but am going to the gym and eating the healthiest I ever have and still can't seem to lose weight!

I go to the gym and can only do light workouts or I literally can't walk for a week!

My emotional state is so up and down I feel like a mess, I can just get so low for no reason and this just isn't me at all which makes it harder to cope with!!!!

I get pins and needles in my hands all the time.

So many more symptoms that I even wonder are they in my head?

My problem now is after writing to my MP the NHS have told me I am not a priority case so could wait until the end of the yr unless I pay for private which I can't. I feel mad because they are basing this info on an app I had a yr ago where my symptoms were not as bad and that particular day was a good pain free day!!!!!

I feel the only one fighting for me is my doc but I worry he will soon think all these random symptoms are in my head!!!!

Sorry for long winded message just feel deflated and know my body and know it is not right!!!!!! :) xx

8 Replies

  • First of all, no need to apologise as this is what this board is for. You are among fellow sufferes so we all know what it's like and are here to offer love, advice and support when needed. So, that's that part sorted. :)

    These symptoms are definitely not in your head, although some of them are subjective. You have been diagnosed on a series of OBJECTIVE medical tests and are taking medication because of this. I have feel the same, as i feel it's just one thing after another, and now I have cellulitis because I got bitten by "something" in China last week. I wouldn't have even thought about going to the doctor with some swolln bites, if it had not been for me posting a self-mocking post on this very forum, only to be told in a rather forceful, yet friendly, manner to get my sorry ass to a doctor asap! :)

    As for the hospital situation - is there another local(ish) one you can transfer to, perhaps with a lupus specialist? Where are you based? Perhaps a fellow loopy on this site might be able to give you some advice, if they are also from the same area?

    I don't have anything more to add, as I am a tad useless on that front, but know that we are here and rest assured that it is not "moaning", but "off-loading" and sharing your troubles, because sharing is caring. ;)

    Christine xx

  • Thanks Christine if it wasn't for this site I think i really would feel I was losing it!!!

    I am in Stirling and forth valley only have one rheumo, apparently they are looking for another and are transferring cases to Glasgow in the mean time but apparently I am not priority which is fine if it was true but the last time he seen me was a year ago when ye my symptoms were very mild, this has dramatically changed. I know people are worse than me but without an official diagnosis or any medication to help me my mental state suffers!!!

    Thanks again for replying so good to have people that understand.

    It's common sense really I feel, an autoimmune is basically ur body attacking itself so obviously we will all get diff symptoms and different problems all over the body but the medical profession seem oblivious to this!!!!

    :) hope you have a good day zxx

  • Bask in the glory of the knowledge that you live in one of my favourite parts of the UK - always used to holiday up there as a kid and have such fond memories. :)

    I think that your rheumy probably doesn't know a lot about lupus because if he did then he would see you immediately. My rheumy (who is just a great big bundle of love) wants to see me every 6 months because even though my symptoms are currently quite mild, he knows that it can change quite rapidly.

    I really do wish there was something more I could do or say to help you. :(

    C. xx

  • The rheumo was a rude horrendous man who is clearly over worked! I feel if he was knowledgable about SLE he would know how things can change and clearly they have!!!

    :) I am from Glasgow but moved to Stirling a couple of yrs ago and apart from their rheumotologist, I love it here lol!!!

    I want to come see your bundle of love he sounds like he knows his stuff. :)


  • I personally think that rhumys should not see patients with lupus unless they are experts or at least have relevant and recent experience. I would like to see a triage service put in place by experts who can 1 take a full history effectively and compassionately, 2.undertake all blood tests and specifically ana etc, 3. follow the agreed criteria for lupus diagnosis as per the lupus uk website, 4 arrange for an urgent specialist review and multidisciplinary care pathway which is holistic. oh look there goes a flying pig :P

  • I agree with Scooby Doo , but with my experience we have to fight and insist to be treated with more urgency, l was fobbed off for years by my GP and Rumey, until l became really ill. I now have a wonderful Renal consultant that specialises in Lupus and really knows his stuff and understands how this illness can cause so much damage and needs to be monitored all the time to be controlled with the correct medication. On one occasion when l was having a flare, l rang his secretary, she spoke to consultant and he told me to come and see him the following day at the hospital and would squeeze me into his already busy schedule. He did emergency bloods and increased my medication accordingly to control the flare. :( I suggest you go back to your Gp and explain how things have worsened and ask for him to refer you for an emergency appointment asap. Good luck and hope all goes well :)

  • Hi Samantha, I have slightly different symptoms from you and am in the same boat - no diagnosis. It is really stressful knowing there is something not quite right with you but feeling like you are getting know where with consultant appointments & GP's/Consultants almost suggesting 'it is in your head'. I am slowly learning from being on this site that the support is fantastic and perhaps one of the things we need to convince ourselves that we are not going 'mad' in this situation. It seems that in many cases there is a long road to diagnosis and help. And I am trying my best to develop coping measures in the meantime emotionally and physically. But it is so hard when you feel alone in your battle so I just want you know I understand where you are at.

    Perhaps I should mention that I did end up paying for one appt with a consultant privately because I did not want to wait - it cost me £210 but I feel it was worth it in the end to discuss all my symptoms and lack of direction. The NHS referral continues so I now have a follow up in 6 weeks. It might be worth paying a consultation privately to get things moving or reassure you about your symptoms. Hope you manage to get somewhere soon.

  • When I became ill I was seen initially through a private health plan. I was so glad to be able to do this as my only real knowledge of NHS care was seeing my mother being left on trolleys in great pain as her life ebbed away with cancer.

    Then as my condition became more involved, I was effectively dropped by my medical plan as it didnt cover chronic conditions.

    When I needed the care, it abandoned me. My consultant referred me to another to be seen under the NHS. I actually saw an improvement in care. A huge improvement actually.

    But that was before the cutbacks (that dont exist), started to take effect.

    The new plan of hospitals referring back to primary care leaves patients with complex conditions being left in the hands of others that lack knowledge. Would you be happy with a trainee flying a plane you may be on.

    Thats what it feels like now. Some GPs have changed patients prescriptions for budgetry reasons or arranged for patients to be see by lesser qualified, but obviously cheaper local services. If this is supposed to be part of an improved NHS its not obvious from my standpoint. As people with chronic conditions will often no longer have access to private health, if they had it previously, the only option is to accept lower levels of care or self fund a private consultation.

    Even more, the public was not allowed any say at all before these drastic changes to healthcare were implemented.

    Staff working within the NHS are facing huge pressures and changes. Many face losing their jobs. I can again see parallels with conditions that my mother would have encountered when she was ill. And all achieved in just 3 years.

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