Good morning my lovlies hope you are all as well as can be 😊
I am hoping you could help me out with questions to ask my consultant when I see him as I feel he is not as helpful as he should be (those are kind words)
Just a brief outline of how I got to be in a wheelchair with lupus and in severe pain.
1. In 2020 I collapsed during lockdown and was taken to hospital where they found loads of blood clots around my lungs and heart.
2. I was in pain all the time so they gave me morphine and oxycodone.
3. I stayed in hospital for 3 months and was discharged pending surgery to cut them all out.
4. They thought all the pain I was in was due to all the blood clots I had around my lungs/heart.
5. Fast forward 6 months I eventually was admitted in Papworth hospital for a new kind of surgery where I was cut open and most but not all of the clots taken out.
6. After surgery I was still in severe pain and they did not know why so they upped my morphine and oxycodone and after a month of partial recovery was discharged, but pulmonary department at Royal Free saw me every 2 months.
7. Throughout 2021 and 2022 I explained that I was in severe pain all over my body, but they could not workout why.
8. In January 2023 I woke up and could not walk - I had to drag myself to the living room to call an ambulance as I was petrified.
9. The pulmonary department could not workout why this was happening so they just kept me on morphhine/oxycodone as my pain was so severe.
10. Fast forward to the end of 2023 I saw a pulmonary consultant who referred me to the RA clinic as she said this might be the problem.
11. After tests it was confirmed I had lupus (SLE) and RA.
12. At first the RA consultant was helpful - he gave me steroids, hydroxy and pencilled me in for the Rituxamab intravenous drip.
13. I thought this was the answer to my prayers and Ithought I was going to get better.
14. Unfortunately, after treatment, I am still in pain, still in a wheelchair and I see the RA consultant every 8 weeks and he just writes a few notes says I might have fibromyalgia and says see you next time!
15. The pulmonary department are pushing me to find out what the RA consultant is doing to help me with lupus symptoms as they have another procedure they want to carry out but I don't know what to say.
Please could I have some suggestions on what questions I need to ask when I see him to pin him down (23 October) as I can't carry on like this.
❤️Thank you for reading this far ❤️
Written by
Lois54
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I am so dreadfully sorry to hear that you have gone through all this. I can't help directly but I wonder if you could do some or all of the following,
Speak to Lupus UK for their advice
Speak to someone from NRAS - they are excellent too.
Finally, send an email through your Pulmonary Consultant's secretary. In the email ask the consultant what exactly is the information / treatment etc they need for you to have in order to undergo the next procedure. Labour the fact that you need this information to support your next RA consultation. Ask them to copy the RA consultant in. Are they in different hospitals? At your next RA appointment, explain that you have a barrier to your next Pulmonary treatment.
I would most definitely ask what other treatments might be open to you since the Rituximab didn't appear to relieve your symptoms. Did the subsequent blood tests show any improvement? (My are consistently stubborn in not showing inflammation even when I have pericarditis showing on echo, so as always, results must be in line with the clinical presentation of symptoms).
I made a chart weeks down one side and Lupus symptoms across the top - e.g. malar rash, joint pain, fatigue, mouth ulcers etc. All on one page A4. I ticked in the box each time one of my main symptoms happened. Very easy to see disease activity. Kept me on the straight and narrow. Take a copy for you and the consultant.
If he is thinking Fibro - ask on what basis he is making that diagnosis- if he thinks it is what support is available? Have you been offered a pain clinic appointment? Is there a danger that constant pain relief is masking the problem. (For example, I was offered pain relief by GP but it would have masked them finally diagnosing pericarditis and possible pleurisy).
Does your consultant also have much experience in Lupus? If not is there an other one who does?
Sorry that's all I can think of at present. Do you have a family member or friend that can go with you? Hope that helps a little bit. x
Thankk you Rosie - I did not think to contact LupusUK as I think they have a helpline.
I have sent an email to the pulmonary nurses and they responded really quickly! They will send me the consultants response tomorrow.
I am really scared to stop the pain meds as I cannot move due to the severity of the pain so will speak to my pain clinic who has been very supportive.
That chart idea is absolutely ingenius - will be ccreating one tomorrow.
❤️Thank you so much - I have gleaned quite a few ideas from your response ❤️
I am so pleased that I could be of some help. Sounds like you have made some significant progress. I do so hope that I didn't give the impression that you should stop your pain meds, I was trying to suggest that you have a very valid discussion point to have with your consultant re trying to achieve low disease activity vs relying on pain meds and how this might be achieved. Do let me know how it goes if you feel able. xx
Just had a thought! If he thinks you have Fibro ask why you are on such strong pain medication. Is this the norm? (I don't think it is). Try asking very open ended questions that make him explain his rationale.
Finally, if you have certain triggers for symptoms add a trigger column - sometimes that can help reveal a pattern. x
Glad to help. The consultant found it really useful. I forgot to mention that it can be useful to have a column labelled triggers (if you think it relevant). E.G. I found that my so called rib pain (pericarditis and possible pleurisy) were always triggered by walking up slight hills but otherwise there wasn't a constant trigger + periods of malar rash without sun exposure. All helps us to present a clearer and succinct picture. Let me know how it goes if you can. xx
Definitely as lights in supermarket and hospitals totally drain me and bring out the rash and walking makes massive difference to feet so that’s a great idea xx
A trigger column is a great idea because I can't leave the house I have been sitting in the sun in front of my large living room windows, and then I wondered why I was in so much pain the following day.
Also I have daily rib pain so will bring that up as I cannot walk so would like to know why.
Ah, when the UV is over 3 I close my shutters until the sun moves. You can check the UV levels on the met office site. Ribs!! Have been the bane of my life. Finally, after several years they are thinking pleurisy - the pain was always on my left side. It then started in the right - confirmed pericarditis. I had all sorts of ideas thrown at me by medics - from Fibro, neuralgia, costochondritis etc. So, trigger patterns can be very helpful, even if they make you realise that the triggers you thought were common actually have no pattern to them. Hope you hear from the Pulmonary consultant today. x
Mepacrine seems to have really helped my photosensitivity this year. Not sure it is an antimalarial widely in use which is unfortunate.
(I have mepacrine 50 mg three times a week in combo with hydroxychloroquine equiv of 300 mg daily. They seem to work well in combo).
I think issue here may be more complex though. Trying to het a handle on things can be difficult unless we have doctors who think things through fully, in relation to specific symptoms, and communicate well with us.
so sorry you’re going through all of this . Rosie has given you some fab advice but just wanted to add that I am so sorry you’re going through this it must be very frightening . Sending a big hug and stay strong 😘xxxx
I just can't imagine what the last 4 years have been like for you - to feel like you are pushed from pillar to post whilst they can't figure out the root problems and then ending up with a not particular supportive, helpful or engaged consultant.
Some incredible advice from the lupus angels on here - which helps more that just the person who posted.
Sending love and hope for getting somewhere and some better support to get you feeling as better as possible. xxx
Thank you - I am blessed (in not suffering), it is my daughter who was recently diagnosed with Lupus and is on the finding the right meds path - I'm here to educate myself to help support her. I am very grateful of this forum which has helped educate me and answer so many questions from people like yourself who is on this life long battle. Its a really great resource from many who have been there done that and got the t-shirt. RosieA as an example, and so many others.
I truly hope you have the questions you need that can make a difference to get you the help and medical care you deserve. x
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