Appointment this Thursday at Leeds with rumi

[Willow1414]

Hi

I have my appointment this Thursday , feeling anxious has I was not able to tolerate methotrexate has my liver function blood test went upto 91 . So I’m to start on another medication and hope this agrees with me . I already take hydroxi .

Trouble is I have sooo much to discuss , and I feel there is never enough time . I’ve been flaring more than usual , my elbow areas both sides are very painful , lifting anything just hurts an awful lot more .

I’m sooooo tied of been fatigued. sleeping and feeling the need to lay down most of the time .

I also have severe trapped nerves in my cervical area .

Waiting and waiting for treatment , has left me to fall more and more into depression . After waiting well over a year to see a specialist , I’m now been sent back to physio due to not having the running pain, yet still having pain and parts of my arm is fairly numb and not much feeling in my first finger end .

I now have pain in my middle back area this started several months ago .

I feel that treatment at times is not has it should be , I recently asked for a copy of my medical notes .

I found a few comments from different practice doctors Really offensive . Due to the overwhelming problems and pains this disease lupus and sjowgrens causes , I do wish that practice docters could be more thoughtful in writing notes .

After one visit when requesting pain relief for severe pain , my doctor wrote at the end . What next ? .

Another practice doctor wrote that he was going round in circles trying to explain to me .

God help me if I don’t understand all the medical terms and need to ask questions more than once .

Surly writing notes like this is unacceptable and down write diss respectful.

I’m now reluctant to go to my usual practice doctor who clearly sees me , as not worthy of respect .

I wonder how many people get to see their full medical notes and read quotes that no one should be writing for other professionals to read nowadays .

I’ve had to give up my job due to my many health problems .

Somehow this label lupus patient , to me feels like I should be treated with less respect .

More education is needed has regards to understanding how at times this illness can really knock you for six , mentally and physically .

I know it’s late , but I just feel like venting my feelings somewhere where I know I can be understood .

I Also wondered if anybody still reading has or is having problems with body twitching . As for the past few months I get a single type movement twitch . It happens mainly in my arms or legs . I sometimes get a full body jerk . I do have irritable leg syndrome , this is something completely different . I did mention it at my last rhumy appointment , this just got written down . No mention of what this worrying symptom might be .

Looking on the bright side , I’ve just booked a couple of short courses . Nothing too taxing .

Thank you reading this rather long read .

🦋🐌🐝❤️.

[Dalilatm]

Hi hi,

I'm sorry to hear that apart from all the physical symptoms, you're also struggling with the medical care you're receiving plus your job situation. That all sounds very stressful; you must be a very strong person!

It's very unfortunate when there's no mutual respect in the doctor-patient relationship. I think mutual trust and respect are essential in this relationship. It's your health and life what you're both dealing with. And, from my point of view I'd only continue seeing him if he's a very well knowledgeable doctor that can keep my trust despite the unpleasant environment. If not, I'd request seeing a different a doctor.

I haven't had any twitch but I've heard from some others who have had it. I'd insist on having this checked. I couldn't tolerate Methotrexate either. It's the worst I've ever tried for lupus! But some others think the opposite XD Which medication are you on now? I think Hydroxycholoroquine is the one with less side effects of all the arsenal but it's not enough for treating our lupus.

Good luck with your courses!! And keep looking on the bright side! It never rains forever.

X

[Willow1414 in reply to Dalilatm]

Hi Dalilatin

Thank you for your reply . X

[Hidden]

You could leave some public feedback on the NHS website, either anonymously or otherwise.

[Willow1414 in reply to Hidden]

Hi Autumnsonnet

Thank you for your reply . I will have a look at this website . X

[Apricot100]

So sorry you're going through this and what a punch to the guts to read such thoughtless comments.

I could not tolerate methotrexate either so came off it very quickly.

I too found the fatigue the worse sympton, folliwed by brain fog. Which made appointments even more taxing. My joint pain has been mostly relieved by an anti inflamm drug.

I hope this appointment brings some progress for you. Is is chapel Allerton you are attending (Just asking as i go there and have found it mostly good).

Well done for signing up for the courses - that's a huge positive and constructive step.

Wishing you all the best x

[Willow1414]

Hi Apricot100

Thank you for your reply .

Yes Chapel Allerton is where I attend .

Yes I hope this appointment today will help.

I’ve written a list , so hopefully will go well .

Trouble is I’ve got to hop from chapel Allerton to St James for 2 more appointments .

So feeling anxious .

I’m really looking forward to first coarse .

It’s only a day coarse .

🧶🦋🐌🐝❤️