Haven't posted for a while due to my health status.
Seeking advice as I've got a horrible temperature (hot and then chills), overall weakness, nausea and fatigue. I've been taking the lowest dose of co-codamol for the past couple of days. It started a week or so ago, getting progressively worse.
Not sure how to approach this due to my recent horrible experience of medical gaslighting, which led to a premature discharge from the hospital with no home support and I don't want to experience this again. I shared what had occurred with my Rheumatologist, who was disgusted.
My GP is not au fait with Lupus and my other autoimmune conditions, so thats a no-go. Furthermore, you can only make contact with them via filling out an electronic form, and you receive a text message with their 'diagnosis' etc. My Rheumatologist is booked up until next year or even the year after. My next appointment with them is in September.
Any advice as to how I can self-manage this without NHS support would be welcomed.
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Amakura
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Just because you have SLE doesn't mean this is SLE causing this episode. Might I suggest you call 111, they will screen you for sepsis/infection and other alternative problems. As you said, you've had it for a week and it's getting worse.
I agree this might not be sle sounds more like an infection. I get like that with kidney/urine infection. It's not something you must ever leave and would need antibiotic ASAP. Log on to nhs online and get a urine sample to the gp for testing or alternatively many chemists will test it for you and advise. It's the first thing I would do with those symptoms. If you get worse then straight to a&e. My husband was feverish, pulse 140bpm and vomiting. He had a bad uti and needed intravenous antibiotic recently and he doesn't have sle. We don't always fight infection easily with sle etc. so things become entrenched quicker.
Hubbie is good just showed what started in a relatively fit man in his fifties as a uti quickly hit his prostate and liver within a couple of days. We are not so fit so things take hold more than a healthy person. I hope you get things resolved quickly. take care
Pharmacy can prescribe antibiotics, I know that’s still NHS but it cuts out the GP and online pharmacies can do an assessment online if you’re not well enough to attend in person. It may cost a bit more but it’s easier and quicker than the GP. I never bother going to my GP for antibiotics now mainly as leaving my symptoms for 3 weeks would undoubtedly cause me more issues and that’s how long it takes for me to get an appointment.
If you need to test your urine you can buy urinalysis tests online and they have very clear instructions on how to read the results. You’ll need to buy some pots too though. Neither are expensive and easily available.
If you're not sure of the source of your infection then I ditto the advice given already and you need a proper assessment. Hope you get well soon!
I get on really well with my Pharmacist, so I will reach out to them. They always go above and beyond. Thanks, I didnt know that. I'll also invest in urinalysis tests as well. Thank you
Thank you for asking. Had a very rough night but continuing to take cocodamol to sort out the tempreature. I'm going to reach out to my Pharmacist tomorrow morning. A&E will have to be the last resort.
Sorry to hear you've been unwell. It's really understandable that you would be reluctant to seek medical support when you've had negative experiences with your healthcare team in the past. However, it's still important that you do seek care so that your symptoms can be assessed and you can get some appropriate treatment. There are some other places to try if you don't feel comfortable or find it difficult to get in touch with your GP:
- You can ring 111 to get some advice and signposting to other places local to you that you could go.
- There are urgent care centres, which is for when it's not an emergency but you need to be seen sooner. One of the things they deal with is high temperatures and general illness. If you ring 111 first, they can direct you to your nearest one and you can sometimes have a shorter wait as they may let the centre know you're coming. you can find more about urgent care here: nhs.uk/nhs-services/urgent-...
- Pharmacies can be a great resource for advice, and many pharmacies have a private room where you can speak to a pharmacist.
- Some rheumatology departments have a patient helpline you can ring and speak to a specialist nurse sooner than your next appointment. They can often give you some advice or make a sooner appointment for you if they felt you needed to be seen sooner.
I would urge you to seek medical support, even though it can be challenging after the experiences you've had. I hope one of the places above can be of help.
I think this is very sound advice. 111 is an excellent resource and they help "stream" or triage patients depending on their individual symptoms and medical history. I simply say this because sometimes there is often a knee jerk reaction to attend the Emergency Dept when some situations can be dealt with in the places that you have listed.
Unnecessary attendances to an Emergency Department puts a very great strain on an already buckling system. I feel that I am able to hold an I formed opinion on this after working as a senior nurse in an Emergency Department for 15 years.
Saying that, any symptoms of infection should not be dismissed, especially in an immune suppressed patient. 111 has a really good website for alerting people to signs of sepsis as well as other time critical emergencies.
So thanks for reminding everyone of all the options to get emergency and out of hours care and advice. 👍
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