Very little help from my rheumatology team.

I have been suffeing flare ups for last 2 months. I contacted my rheumatology team to ask for help as my knee had swollen up. Feet really aching. Chest heavy entire body just completely ached. Not sleeping as in pain. Tired so very tearful. Pain just got too much. I left numerous voicemails asking for help with this. But never had any reply. I contacted my general gp. Who answered but not knowing anything about rheumatoid arthritis he just asked what drugs do you need and I will give it to you. I have had steroids before which helped as a short term thing. But not long term. I was also prescribed tramodol for the pain which helps. Just makes me drowsy. But how can I prescribe my own drugs I am not a Dr. Can't take any more steroids took my full amount. But still not got an appointment with my rheumatology Dr. I had an appointment booked for the last 6 months. For Jan 13th. So was looking forward to finally seeing a Dr that knows what he is doing. Then I got a letter saying it's been cancelled. Tried ringing my team to rebook. But no luck as of yet. Even begged the nurse I spoke to today. I need help. I am at the end of my tether everything is inflammed and burns. Even feels like it's spreading from wrists to elbows know. Feeling completely ignored. All alone. Just need some advice. I need a good. Nights sleep. No pain. And to get on with day to day life without dragging my feet about and not being able to grab things properly. I M only 44. What's going on. Obviously my sulfasalazine and hydrochlorycoxquine ain't helping. Xx what's going on with the NHS.

40 Replies

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  • How awful for them to cancel your appointment!! Oh I'm so sorry that you are in alot of pain. Sulfa & hydroxy did nothing for me either.

    I wonder if you can "jump the queue" if you go to the ER?

  • Can you show the link to your " published medical journal" that has not gained any traction? What medical journal is this published in?

  • Hi Suzanne....the link to the Helen Foundation is a link to buy the info!

  • Thanks AG. to the self proclaimed scientist below. I'm so sick and tired of people trolling this site to "suck people in and steal their money" . Shame on you

  • Also did you see on TV last night (5/1)!details of how much the Paleo Diet that is mentioned here sometimes, costs?

    They were comparing cost per lb weight loss with cost per £! All the diets (results were viewed) were mega bucks!

    I was then very grateful to Leflunomide for losing me 12 Kgs for nothing! ( Not really!)

  • It really bothers me how people make money off the suffering of others.

    I had MS when I was in my 20's and I was one of the lucky ones whose disease was begnin and went into remission on its own. I would never claim I cured myself, as a pack of cigs, beer and pizza is not a cure.... ( I was 22 with bad eating habbits)

  • But wasn't it great to eat & drink like that? We just didn't know any better!

    I think kids today are far too involved in diets etc. When I see a young mother asking her 3 year old what she wants for lunch I want to shout "You're the mom...you decide...if you do that now with a healthy selection your kid won't want a gastric band when she 18"!

    I don't of course, because I'd probably end up with a black eye.....but parents have got to learn not to let their kids start off being allowed to choose all the time.

    We all know a teenager who started off nthat way........& wish we didn't!

  • I love your attitude AG!!

    I grew up eating my mothers healthy food. We always ate healthy and by the time I moved out, I just wanted Junkfood. Boy oh boy I could eat and drink anything and not gain a pound :) those were the days.

    I always fed my kids a healthy meal. Infact having kids made me eat healthy :)

  • I'm so old junk food hadn't been invented when Ieft home!,

    A " Full English" (fried eggs,bacon,sausage,beans & fried bread.) breakfast was about the closes to junk back then!

    Until I was 40 I too could eat anything, but someone' pressed a button & suddenly at 40 I started gaining weight.....but I didn't seem to eat any more...but went from 100 to around 135lbs, until Leflunomide worked me over me over & I'm Now 110lbs!

    It' was an expensive summer ..all my trousers looked like clown pants so I had to replace them. .I'm just looking at winter pants...a few pairs of jeans & some chinos was OK....but "proper" trousers Wow...I wish we had sales like in NY...here they take off 10% & act like they are really giving you a deal!

  • Holy cow! A full english has bacon & eggs & fried bread? wow.

  • I forgot the black pudding ...oh & the healthy bits...tomatoes & parsley to garnish

    ,

  • I do love tomatoes & parsley. I have to admit that I had to look up black pudding....one word comes to mind.....YUK! Pudding is a dessert custard here, nothing to do wiith blood & oatmeal & sausage.

  • It's scrummy with crispy bacon & tomatoes....but very unhealthy.

    I'm just about to eat prawns with home made passattta & tagliatelle, unfortunately I banged banged my head when I broke my arm & doc days no wine 'til next week!

  • 1. Stenberg VI, Bouley MG, Katz BM, Lee KJ, Parmar SS. Negative endocrine control system for inflammation in rats. Agents and Actions. 1990; 29: 189-195

    2. Stenberg VI, Fiechtner JJ, Rice JR, Miller DR, Johnson LK. Endocrine control of inflammation; rheumatoid arthritis double-blind, crossover clinical trial. Int J Clin Pharm Res. 1992; 12(1): 11-18

    Please concentrate on science, not money.

  • Yes, science not money...so why do you charge money?

    Here are some reviews from the Helen Foundation

    pissedconsumer.com/helen-fo...

  • So here is the link to the clinical trial #2 Your cure seems to be prednisone

    ncbi.nlm.nih.gov/pubmed/152...

    Your trial#1 was done with cortisone on rats. I'm having problems with the link. But if anyone wants to post it or look at it. Just copy Virgilsa # 1 clinical trial and put it on google.

    The "gist of it " is "Apparently rats who take cortisone have lower inflamatory markers...

    And you charge how much for your cure? Tsk Tsk does your mother know what you are doing?

  • Hey virgilsa why did you delete your post that gave us information on your personal cure of RA for a price? You know the one that claims other scientist gave it no attention? Was it because you are selling prednisone as your cure?

  • I think HU might have taken it down?

    I told the,NRSA about it, but it was gone before they could see it!

    The less people who get involved with the Helen Foundation the better. From the experience of the lady who ,lost $7k+...they have their,T&C's in place so that you,can't get a refund, even if you don't get what you thought you were buying.

    It's sad that people who can't make an honest living stoop to cheating people with painful life altering conditions, I bet they can be found on a lot of sites like this.

  • Anything is a must

  • Poor you, your doctors are treating you appallingly badly. You need to get control of your condition before joint damage is permanent. Can I suggest that you start putting things strenuously in writing to your rheumatology team? I email my Rheumy nurse and have a reply within 24 - 48 hours. There should be an urgent access clinic that you can attend - what about a call &/or letter to your Rheumy's secretary or even directly to him/her? You can't continue like this so please be much more forceful and demanding. Wishing you the very best success. Clare x

  • You could also contact the Patient Liaison Office at your hospital.....they are very good at chasing cancelled appointments.

  • I have left numerous messages on my rheumatology secretary number and advice line number and still no reply. I rung 3times yesterday left 2voicemais and finally got through to a nurse but she did not know what was going on. So took my name and number and will ring me back today. I turned my phone on when I eventually got up today to a voicemail from a nurse said ring me back on this number. I ring back straight through to voicemail again. Hitting head against wall. Gggrrrr

  • @suzannedale - I can't believe there are still people in this day and age that can,and do,prey on the sick and vulnerable - I truly believe in karma and I hope these delightful people get what's owed to them... hopefully sooner rather than later!!

    And I'm so sorry that you had to endure that to realise the hard way.... their is a word to describe vultures like these,but I certainly couldn't type it on here!!😤😤

    AgedCrone is correct in that getting PALS(patient Liasion) involved would prob be the next step in order for anything to be done promptly,or chase up your GP,and get them to write a letter on your behalf explaining how the delay is effectively making your symptoms worse,I did this after they cancelled a very long awaited appointment just weeks before it was due,and then rescheduled for 7 months later!!! It ended up with me seeing the rheumatology nurse for the first time,but she did more in that one appointment than all of my rheumatology appointments previously - it was down to her that I was put forward for Enbrel,as at the age of 42 I felt that I had no life quality at all,esp as I was reduced to having to use a Powerchair at that point too - I literally looked like someone else from the waist down there was so much swelling and inflammation going on.... just having clothes against my skin used to irritate and flare me up too at that point - so to go from a gym bunny at 40,to being in a wheelchair at only just 42,I was desperate to try anything. She truly was/is an angel,and she could see straightaway what I'd spent months trying to get my consultant to understand. There are definitely ways of dealing with cancelled appointments,and I think the two methods already advised(pals or gp) would be the best place to start right now.

    Good luck x

  • GO TO A&E. xxxxx

  • Hi I just wondered if you have your consultants secretary's number because that's what I do if I can't get through to the help line at my hospital and she usually pushes things quicker I live in Scotland and it might be different where you live , there is nothing worse when your in constant pain and cannot get a hold off anyone hope you get things sorted out xxx

  • Consultants secretary is a very good idea - I'd completely forgotten about that one. I'd definitely give that a go too x

  • If it was me I would go to A and E at the hospital !! I don't know.where you live..but it sounds like the rheumy depth at my hospital in Essex??? Useless Hooe you do get some result and will be feeling better soon xxx

  • Hi linda-5502

    You wouldn't be north Essex would you? It definitely sounds like when I ring the dept number and it's as if they've all gone home already😝!

  • I go to Orsett or Basildon hospital how about you both are no good.all I ever see is a registrar not the consultant. I have the name of one in London who is supposed to be the best if no joy in Feb when my next appointment is I am going to.ask for a 2nd opinion with him. Had a flare up in Nov phoned the help line no JOY!!!!!! So fed up like you xx

  • Omg - no wonder you're in trouble,I used to live in west Thurrock so Basildon was my local hospital and they have got to be the worst hospital I've ever experienced for anything!! I'm actually quite lucky as since I've been diagnosed I now live out by Colchester,so even though my consultant is based in Colchester,I get to see him at halstead hospital,which is literally two mins up the road from me. I've been lucky in the fact I got on his list because I used to have private healthcare through work,and went onto his NHS list that way,but I've had to use Colchester hospital once for a different consultant,and it was pretty much a free for all - you never knew who you were seeing,and they didn't even ask any questions,which gobsmacked me as I'd turned up in a wheelchair where things were that bad at the time!! I've also had my moments with my consultant because I'd dared to question him at one appointment,and it got to the point of me asking the nurse how I'd go about putting in a complaint about his behaviour towards me,and I think things must've been said behind the scenes,as my next appointment was great and he actually treated me like a person again. It's just so frustrating trying to get hold of him inveteeen the 9/10 months between appointments,the phone just rings and rings for the dept,but I've been lucky enough to either get hold of one of the nurses and ask questions that way,or just nip into the hospital up the road and ask the receptionist there,as it's such a small place,as much as they don't answer the phones,they are very friendly and helpful face to face 😊

  • Contact the rheumatology secretaries, get an email address for the secretary of the Rheumatologist you usually see (although these days anyone is lucky to see the same person) and put all these issues in an email to them. I find that usually triggers a phone call from the rheumatologist and an appointment in the near future. Good luck.

  • I'm in the same position doctors don't listen either that or don't know what to do, I've been in constant 24/7 pain for seven years now it's in every bone of my body I had breast cancer six years ago and the tablets I'm on also had side effects of arthralgia (joint and bone pains) and to top it all had blood tests done two weeks ago and had now put me on atorvastatin for high cholesterol with side effects of muscle pain I stressed to him in already in constant pain but didn't seem to listen in 72 but apart from pain am a very independent person and not ready for a box just yet why don't they LISTEN!!!

  • You may be able to find the rheumy secretaries phone number on your hospital website.

  • U already leave messages in there and no one he to back. I left 2messages in one day. Then rung back at about 4when I eventually left work and someone answered took my details as they need to ask someone else. Aaarrggg

  • I had the heavy chest , ra awful feeling , nothing helped till I got on enbril. It take up to 3 mounths to work for pain, some say it's not good for the pain . [ still waiting , looking into that. But it's a hole diff world for me to not have that mental foggy feeling and heavy chest , body feeling. Love love it. Just pray it helps my joint pain , I guess the inflammation causes the pain..I'm working on answers..but hey what ever doctor that cares, I say get the meds from them..I wouldn't made it without my family doctor hearing me and going the extra mile to find out what was wrong with me..then she found me a great rhurmy

  • Hi Cynthialcj

    I started on Enbrel back in Jan2016 ,and I,plus my family and rheumy nurse, noticed a marked difference within a month - it has certainly given me my life back,and even though it took a full 8 months before everything finally clicked into place,when looking back at pictures from before I was on biologics,I still can't believe the pics are of my body!! The difference is incredible - if ever I feel I'm having a bad day now,I just look back at those pictures and realise how far I've come and exactly how much Enbrel has kept the inflammation to a bare minimum - ok,so I still see lumps and bumps,but it's almost as if they're nothing in comparison to before. Hang tight,it may take a while,like me,but it will definitely be worth the wait. X

  • Hi I was in exactly your position last May, couldn't get any help from any where...I was seriously considering ending it all I was in such pain and despair......Get someone to take you to A&E ...that's what I did and I was kept in for 3 days, and saw my own RA consultant, given an infusion and I've been well looked after ever since... You really do have to shout loud to get the help you need my friend...

  • Thank you, I no they just don't realize how much pain we endure. It's real. Dressing everyday , showering , I feel like I'm not in my own skin, then they roll there eyeballs at you ..not empathizing at all. I have a good one now . Prayers

  • That is absolutely insane. You need treatment. It sounds as if you need a biologic like Enbrel or Humira. I have Ankylosing Spondylitis (another form of inflammatory arthritis) and went through something similar. The help I got from changing my medication was incredible. I don't know how the NHS works, so I don't know how to help you. Can you go to the ER and say you are going to kill yourself if someone doesn't help you? Because that may be the truth.

  • Wow that sounds appalling and I genuinely

    Hope that something gets sorted for you soon.

    I'm reading all these posts and thinking wow! I feel extremely lucky I'm in Scotland - I have regular rheumatology appointments, always see the same Consultant and if I need to get in touch, always get a call back if not same day, then the next.

    To me, this is the way it should be for everyone? I would definitely take further action and as has been suggested already - if all else fails, present to accident and emergency department.

    Wishing you the best and a swift resolution x

    Marie

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