Cant Get Answers!!! mattcass

Hi All, Sorry for not being in touch this is the worst 5 days of pain I have experienced in my life my RA is constantly attacking my wrists and hands my hips and back and for the first time severe pain in my groin area, I have tried all combinations of painkillers without success, It got the stage Fran phoned NHS 24 for advice only to be told if I went to A&E they would give me a choice of morphine based drugs and send me back home I told them it was pointless going there as I would refuse to take any morphine,

I’m the middle of a war between my Rheumy doc (blaming hydroxy) my GP (blaming Rheumy doc & (hydroxy) and the Chest doc (blaming GP & Rheumy doc & hydroxy) on what meds I am on and trying to agree what they should put me on, In the meantime no one is answering me on what is happening, to be honest I can really appreciate people less weak than myself looking at the pill bottle and wondering that’s all it would take. Sorry for being down maybe it’s because I am stuck in the house. Mattcass

22 Replies

oldestnewest
  • Oh sweetie, your caught between the devil and the deep blue sea. I can totally understand you feeling down.

    Could u try, again, phoning the Rheumy helpline and tell them of your distress. I think you could as well or instead of, phone the secretary of your consultant tell her your predicament and she may be able to get your Rheumy to talk to your chest physician ASAP?

    Are u allowed steroids? But whatever you need help now it sounds like.

    Really really thinking of you and hope some miracle such as the secretary getting his/her finger out, I need the help now, demand it!! Sending gentle hugs xxxx

  • Oh I am so ,so sorry for you Mattcass. I have been in a similar situation myself in terms of battles between medics re drugs and I know how difficult it is to know just what to do - or indeed to get any help at all. It seems that NHS 24 have been very unhelpful (to put it mildly) and just leaving you in severe pain is just not on. Given the severity of pain you are in, I am thinking that A&E may well be the best starting point - I would hope they would at the very least be able to to talk to you about the most appropriate pain drugs given your complex medical conditions and to suggest an alternative to morphine for you given how badly it affected you before. Like Allanah, I was wondering if you are able to have steroids and, if so, something like a steroid infusion might give you some much needed relief. I know that doesn't address the underlying issues but it might at least tide you over until the consultants can sort out what's what. If you are not able to get to A&E with Fran's help, would you consider calling 111 (or is this what Fran called before) and asking to speak to a doctor or for a doctor to come out to you? And if that fails calling 999 for an ambulance to take you to A&E? I know that sounds drastic but given that you are in severe pain and have, despite your best efforts, been unable to get any help, maybe that really is your best option.

    I feel for you so much and hope you can get the help you need very soon.

    Tillyx

  • It really should not be like this for anyone in the 21st Century Matt. As Allanah and Tilly both say it's wrong to have to suffer so much and I really do feel so much for you. I hope you took up their suggestions as both know how it is to be in terrible pain. For me I usually take Naproxen but did find steroids gave me a break too when things got to be as you describe. Horrible being caught between doctors too - I know how this feels. Tilda x

  • Hang on in there Matt....we're all with you.....wish I could wave a magic wand and get rid of all this wretched RA devilry.....big gentle hugs to you xxx

  • That sounds awful Matt, no wonder you feel down. I bet even Superman would feel rubbish if he had to put up with what you're havering to deal with. I'd also book another appointment with your GP, as they're supposed to look after you overall and help coordinate between different specialists. So things like pain management should be something they care about. take care. Polly

  • Hi Matt, I m posting a reply late?? are you intolerent to morphine?? ie does it make you bad??, or it the scary thought of the word morphine??. I work in a hospital pharmacy and often have to explain about morphine drugs to people, most patients associate it with dying and or cancer... and I have to sometimes pull out the stops to calm people.. the dying/ cancer morphines are the stronger sorts such as diamorphine which is usually delivered via syringe driver.

    One effective but weaker morphine is liquid morphine( oramorph).. I had a patient that was scared because of the word morphine..but I assured her it was the weakest form of morphine and not given to her for above reason..

    I took it myself for a short while when pain levels were bad , but I made myself take the lowest possible dose.

    If you have a problem with drug reaction( I cant take tramadol due to anaphylatic reaction).. how about the tens machine or steroid route??. Sometimes drugs like amitrypyline and gabapentin can be used for pain too another option x

    Take care Alison x

  • Matt, first off go to p.a.l.s and complain to them at your hospital and see what happens from that,also as has been said go to a&e as well you need help fast my friend. It will get you into the system and they might admit you to get you sorted out. This is what you need matt. Sending hugs to you and i hope you soon get some relieve soon.xxx

  • What is p.a.l.s?

  • It is a patient service when things go wrong or the service isn't what you expect. You write to them and they look at your complaint.They are in every hospital and mine is next to the reception area. If you have a problem with your hospital ask at the reception at the main entrance.xxx

  • I am in Scotland things may be different here. I presume P stands for patient but can't guess the rest can you spell it out please.

  • I'm not sure what it all means,but here goes,patient .....liason service. xx

  • hi eventually found it must be NHS England thanks

  • You poor thing. When every hour seems like a day, waiting for doctors to shift themselves "urgently" is so hard. Like other people have said, consider A&E. It will flag your name up in the system, and hopefully get things moving in this triangle of doctors you seem stuck in. I really feel for you. Big hugs xxxxx

  • I can so understand your feeling of frustration and anger. I have been fighting with docs for over a year and hopefully tomorrow will have some answers. doesn't help you at all but I can feel your pain after a frustrating year. Shame you can't have a teleconference with all of them on the line and say "sort it out, I am in pain here people"! i hope they stop playing silly B's soon and you get some help.

  • So sorry to hear this. You seem to be getting a lot of different good advice, so apologies if I add to the mix. If it was me I would insist on an appointment with your consultant - or if they're on holiday, one of their colleagues. Given the hierarchy we're dealing with I'd have thought that going to the top might help to sort things out a bit. In the meantime, I do hope that the pain levels even out a little bit.

    XX

  • I feel very sorry for you but everyone has already said the things that I would say.

    I think you should go to A&E and get them to get someone to help you as you can't go on like this.

    Mary x

  • So sorry to hear your in so much pain. Can only echo what others have said.

    Really feel for you & Fran x

  • So sorry Matt to hear this. Sorry too for late response, but I had to go off early to hospital to have my first Humira injection at hospital this morning then back home then off to another hospital appointment in another direction at 4.30pm. Shattered now!! Anyhow, think Summer and everyone has given excellent advice again and I wish you were able to take something to give you the level of pain relief you really need.

    (I crawled the wall these last three months waiting for a bioogic that didn't work for me so I know how you feel. The pain was the worst in my 17 years of RA/OA. I felt if I could have climbed up onto the bedroom windowsill, I would have chucked myself out onto the Rose bushes. Would have ended up with a spiky bum so gave that idea a miss! ;-) Seriously, being housebound is so demoralising.)

    Can you take the LOWEST level of something like Fentanyl transdermal patches? They are an opiate and the only side effect I have at an intermediate strength is sleepiness but not always. I know you do have other major health issues to consider for your meds. Do you have a pain relef clinic or can you make a separate appointment to discuss meds and pain relief? Since I have been over compensating for my bad knee I have been wobbling about on my sticks spraining things left right and centre, and walking/climbing stairs in a very unorthodox fashion,my groin has started to hurt ike mad. Sometimes in the inner tendons then sometimes it seems have gone right into the bone. This is the worst pain I have known for 17 years so I fully understand.

    Am I right in thinking you haven't been on your Hydroxy very long? It would be good if your doc/rheumy and chest docs could quickly liaise and then communicate with you so you know what's going on. That seems a simple concept but I know these things don't always happen so easily.

    Yes, I am sure they would try give you morphine if you went to A&E as that is exactly what my GP wanted to do for me three months ago ... Drive me there himself and tell them to deal with my problems.

    I hope the three docs can agree what is the best med for your joints and let you know what is happening very soon. If not then it is a total nuisance but keep chasing or ask your wife do it. Again,been there. Got the massive phone bill to prove it. No one phoning me back as promised. I hope they do phone soon, you dear Matt, as you can't go on like this. Is does take its toll on you and make you feel down.

    Hoping and wishing it changes very soon for the better, Matt.

    Hugs,

    Julie

  • Hi Mattcass,

    Hope you have decided to go to A&E as most people have advised and have got some pain relief at last. No one shoulder should suffer as much pain as you have had over the last few days. Keep on fighting to get the right treatment for your needs. Your story makes me feel so humble as although I have had my moments with RA flare ups this year it is nothing compared to what you and some others on this site have to put up with. Sending you my best wishes. Stay strong. Jean x

  • my should be the chief in charge, so he needs to know how bad all those things have been. Now that it is later in the day for me here in the US, it must be after midnight there, so have you been able to resolve anything with anybody? I am sending you lullaby's to get you some sleep time :) Hope they make it across the waves !

    Loret xxx

  • OOPs, looks l ike the first part of my post didn't make it over there! I was saying I had read your post earlier and thought surely the Rheumy would be the chief in charge....

  • Have you thought of changing your GP?I found that even within a small area different GP's refer patients to different Consultants. Maybe you could ask around about a caring RA Consultant and see which GP refers to him/her? Bit of a "round the houses" route - but it just may be the answer.

    I feel for you as I have frequent flares in my wrists and usually get a steroid injection - but be warned it is quite painful for 2 or 3 days after the jab.I do hope you get some sort of help very soon........................Kathy

You may also like...