I went back to Guys hospital on Tuesday for the 2nd time. When I had gone in December the Dr there had planned to see me in 6 months and then discharge me from them he was happy with my local hospitals plan of treatment.
I now have another 2 appointments booked for Guys hospital. I was very frustrated and upset after Tuesday. It took me a long time to calm down. I am now trying to see positives from that appointment instead of it being a waste of time like i felt it was. The dr did not seem to really listen to me and told me that some of the pain i said i was having did not count for me to have different meds. He told me we need proper evidence to allow me to try stronger meds. I felt like a total liar and as if i was making myself seem worse than i am. He gave my Hydroxy to start on again.
I am taking the positives from that appointment though;
- I need to go back to guys for a scan of my hands to check for inflammation
- I have an appointment to see Guys specialist nurse in August
- I have an appointment to see the dr again at guys in November.
My GP really helped me went i went yesterday. She told me that if the Dr at Guy's didn't think I needed to be seen he would not of seen me again. So that definitely made me feel a lot better.
I have an appointment in July with a new local rheumy consultant. I am interested to see what comes out of that one.
I have also asked my GP for some counselling. I think I need to talk to someone about coming to terms with living with my lupus and arthritis. When I was diagnosed at 15 I was told I had lupus and that was it. I never had anything explained to me. If it wasn't for this group I would have probably given up a long time ago. I do fine on a day to day basis but when I go to an appointment like I did Tuesday and it does not seem successful to me I am straight back to being 15 wondering why me. I just wondered if anyone else has had counselling about coming to terms with there illness? Or learning ways to cope when expectations for an appointment are not met. If so has it been helpful.
On a better note I went out to the park today with my cousin to enjoy the sunshine. The sunshine made me feel so good. I felt better than I have in ages. So hopefully the nice weather will carry on!
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LouLamb
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Hello LouLamb. I’m sorry to hear that you had such a disappointing appointment. I’m pleased that you are trying to find some positives though. That’s a good approach to take.
I completely empathise with how these autoimmune conditions get on top of us at times. It’s a totally natural reaction to become quite depressed and anxious at times. It’s almost as if I mourn my future self at times. I hope counselling helps you. I take an antidepressant to help me and that seems to be working for now.
I’m glad that you are persevering with your hospital appointments. I hope that your care team get to the bottom of what’s causing your pains soon.
Hi LouLamb, My wife is treated at Guys and we have always found the nurse helpline really useful for outstanding issues and matters that come up between appointments. They refer to the consultants when they need to and have the time to explain and more importantly listen and record. Try and work on bit sized chunks this way and hopefully it will help. good luck
It sounds like you’re having a really tough time at the moment and I really hope it all improves. It sounds like you’re trying to be positive in a really tough situation which is amazing!
One of the first things the GP got me to do after my diagnosis was self refer for counseling. It took a few months to be assessed and to get a counselor, but it has made a huge difference to me and my general well-being.
The doctors and specialist are all trying to make me feel better physically, but the diagnosis has had a massive impact mentally and my counselor is helping me to come to terms with that. She’s helping me to mourn what I’ve lost both now and for the future and to make peace with it and to find the positive in what’s happened in what ever way I can.
One thing she told me about which really helped me was the Japanese art of Kintsugi, where broken items of pottery are repaired with gold or silver lacquer (it’s beautiful, google it) and so instead of hiding the broken part, its mended and becomes something more beautiful. With this in mind, I am trying to think of the Lupus as something like that, although a right royal pain in the ***, it makes me stronger, more resilient and hopefully at some point in the future once I’ve come to terms with it and learnt to live with it all, a more beautiful and happy person as a result - one can only hope!
I hope this helps you, and I would really recommend counseling and having someone to talk to, it’s made such a difference to me and I hope it helps you too!
I so agree about counciling it has given me my life back after my stroke in October. All major cancer centers here offer counciling and oncologists always suggest it. I do not know why it is not recommended more for all chronically ill patients. Although it does not cure cancer or lupus, mindful CBT therapy is proven to greatly improve quality of life, increase survival rates in hiv and breast cancer patients, improve cognitive scores post stroke and in early onset dementia patients, heal skin quicker than light box and medicine in psoriasis, lowers inflamation in RA and prevents flares in lupus patients. Acceptance and commitment therapy (ACT) is showing great results in pain management as well. Therapy not only helps us accept our disease caused losses it may very well prevent or slow down progression.
The mind and body connection is a bidirectional high way and you can not reach good health with out treating both equally.
Hi,sorry your day was upsetting. At least you have more appointments.%. My lupus diagnosis of lupus is recent,wlthough. I think I have had it for some time.
Lupus attacked my lungs first,thought my asthma was worsening.
After 11 day admission last November ( local hospital really messed me about for appointments) I was diagnosed with Non specific. Interstitial. Pneumonia.
Discharged referred to Manchester hospital- brilliant,they were honest. The lead consultant s first words to me were you won’t get better,we hope to relieve your symptoms.
I was happy with his honesty,don’t want platitudes.
Anyway,had to visit GP,I Told her ny psychologist friend had suggested CBT. She said it may help and gave me a leaflet to self refer,which I did online. This was Chry Eve,so didn’t expect a rapid response.
On. New Years Eve,got a phone call. Telephone assessment for CBT
Was straightforward,answered best I could.
She told me that I had scored as eligible for CBT.
I Had the choice of online or face to face. I chose online,as at that point I had appointmentscoming out of my ears.the online meant I could do it from anywhere,although it ended up being done at home.
I wanted CBT ASworked in. Mental. Health for many years and am very aware of how physical/ mental health affect each other.
At this point my head was mashed,didn’t know what to think,felt ill- high dose steroids 2 types of prophylactic antibiotics just about kept me functioning.felt uncertain about the future.
By now. I had a diagnosis of Connective Tissue Disease. Non specific interstitial pneumonia.little information available.
Any way started the CBT.didnt know what to do xpect.
It was weekly at a preplanned time and date, mutually agreed by us both.
After each session,the transcript was available to read. Some tasks were set, and there was also a section for me to assess my goals and my progress towards them.
Sometimes it was challenging,it did make me think.
It helped me reassess myself and realise that I could perhaps help myself.
It didn’t make any difference to my phys condition,but it helped me sort out and re organise my thought processes.changed some of my boring cautious habits egbought a. Christmas patterned dress to match my grand daughters, am more spontaneous,when my health was a bit better would accept last minute invitations.when i fe better,will do this again.
Have accepted that I won’t get back to my old life, need to embrace the new life that lies in front.
I think CBT was successful for me on the whole.i now have a diagnosis of lupus,on the 4 th week of immunosuppressants,bit of a struggle.trying to ge5 access to a specialist lupus nurse. Back to see rheumatologist and lung doc together. List of questions get longer.
Sorry to ramble. I would advise you to try the CBT,if you can hope it works as well as it has for me
Hi Loulamb, I think your doctors are being cautious about giving you stronger meds because being on immunosuppressants can cause side effects and other problems, and they don't want to prescribe these if there is another medicine that can help. If your test results show inflammation, hopefully your doctor will find the right meds to relieve your symptoms. If you still feel like your quality of life has not improved, don't be afraid to tell your doctor this; as lupus patients we have to learn to be our own best advocate.
CBT/ mindfulness, to address my GAD and PTSD mixed with ACT, to help deal with chronic pain, has changed my life in just a few short months. I so wish I had addressed my mental health, specifically my generalized anxiety, early in my life. I feel my life long heighten state of anxiety is somewhat responsible for my acquired autoimmune antibodies by altering my gut flora and contributing to increased inflammation. I hope by keeping my anxiety in check I can help starve off any further flares and organ damage. I highly recommend it and hope you can find similar effects if you try it. Xo
Hello dear loulamb. Sorry i’ve come late your post, but you know how it is: my spine op was over 2 weeks ago, and i’m not feeling up to speed quite yet.
Am so glad you’ve got all these great replies - there isn’t much i can usefully add except to answer your question:
As you know i’m 65 now, my 3 primaries are all infant onset (systemic lupus + antibody deficiency disease + hypermobile ehlers danlos) and i have relied on several types of wonderful psychological + physical therapies/counselling ALL my life to cope with my illness...i need all of them, sort of the same way i need all my combined therapy daily prescrip meds. These are the therapies that have helped me most:
Transcendental meditation
Yoga
The Alexander Technique (helps with more than posture alone)
Psychosynthesis therapy
CBT
Tai Chi
Pilates
If i were young & starting counselling again, i think i’d start with doing CBT & The Alexander Technique at the same time
Hope something in there is useful...
Hope you’ll continue to keep us posted...am so glad you’re here
🍀❤️🍀❤️🍀❤️ Coco
PS in case you’re not familiar with Psychosynthesis, here is a link to info...it’s made a huge pos diff to me over the decades..i haven’t needed to see my dear long-time therapist for about 7 years now, but every day i do practice everything she helped me to understand about how to help myself live with my illness burden:
I have got an appointment on the 10th July to see someone. I presume it will be some sort of CBT. I am hoping it will help me. I have a super busy next 2 weeks coming up. I know it will be hard to process if these appointments do not go to well. I am glad I am booked in to start some counselling whilst all these appointments are going on.
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Rheumatoid appointment
Another pointless appointment...
Uctd diagnosis taken away 
