Bad flare up

[Josiah150767]

Hi All,

I’m finding it hard to post this as Im usually the kind of person that just gets on with it, taking the rough with the smooth. I have lupus and fibromyalgia. The last three months has been awful as I know it will be the same for a lot of people and for the most part I’ve just been getting on with it. I moved back down south just as lockdown happened. I registered with a gp and was advised by the surgery to contact my rheumatologist to refer me to rheumatologist here, which I did. Didn’t hear anything so asked gp to refer me, which she said she would and didn’t. I have had a bad flare up and had to get doctor out, blood test showing markers up. I have been in bed for the most part of 2 weeks and my face was swollen, painful and very itchy, chronic fatigue, painful joints. The flare up is subsiding, but still grumbling. I have now been referred, but don’t know how long I’ll wait with the way things are at the moment. I am currently going through a pip claim as I had to give up work in jan. I only worked one day and even found that difficult, so I have no income. I have found it stressful as I feel I have to convince them of how unwell I am. I feel very low and feel like I have been left to get on with it. I don’t like to moan, but I feel very isolated at the moment.

[Spanielmadlady]

Hi. You are not alone so many of us have been where you are now me included.dont let your pip claim get you down .. that's what they want.you may get refused but you keep appealing ...citizens advice can help.

With regards to your flare you've got to shout to get the help you need and dont be afraid to do.i also get on with it and know how to deal with minor flares but when my flares are bigger I dont hesitate to get on the phone to my gp or consultant ..

There is tons of support on here so dont be afraid to rant or moan.

Come on chin up....you are a tough cookie xxx

[Josiah150767 in reply to Spanielmadlady]

Thankyou for your reply. Since posting this I have called the surgery as my flare up is escalating. My gp had left but I have to phone first thing in the morning. I’ve had this flare for over 2 was now. It’s nice to feel I’m not alone.

[Spanielmadlady in reply to Josiah150767]

Make sure you ring tomorrow and stand your ground.i appreciate some people are private people but this is an excellent forum for support and advice especially if you are feeling alone or down .no one on here judges ,talks nonsense or preaches because we are all in the same boat...its just a different shape and size.

We even recall some of our funny but embarrassing moments to cheer people up 😁.between us we can make living these illness easier .bug hug xx

[miccika1]

I usually just take a round of steroids when in such shape. Do you have someone , a gp or anyone that can give you proper meds?

[Josiah150767 in reply to miccika1]

Hi

When go came out, he didn’t prescribe me anything. He wanted advice from rheumatologist first. It’s been nearly 3 weeks now that I’ve been in this flare.

[miccika1 in reply to Josiah150767]

That's ridiculous. What did you do with the previous rheumatologist? Was he/she managing your flares with steroids? Tey calling again go and telling how previous rheumatologist managed your flares and that he needs to help you while waiting. I always have an extra round of steroids to take so i dont need to wait for a new prescription and can take it once i start flaring

[Josiah150767 in reply to miccika1]

Hi

I usually just went to my gp and he would prescribe a short course of steroids until I seen my rheumatologist. I spoke to my new gp tonight and I’ve to up hydroxychloriquine to 400mg. If that isn’t helping to call him back. He has done an urgent referral to rheumatologist where I live now. What’s upsetting is that this has been going on for 3 weeks now since I had to call him out.

[miccika1 in reply to Josiah150767]

Well I can tell you it's nor gonna work for an acute flare. It takes a couple of weeks to get benefits of an increased dose. Steroids act immidiately, that's why your previous rheumatologist prescribed it to you for an acute flare. Knowing this I would just call back after a day or two and say that you aren't feeling any better (if thats the case of course). I hope long term 400 mg will prevent such bad flares for you! Long term sounds like a good idea to me :). I would do really badly on 200, but we are all different...however the fact is that hydroxychloroquine simply doesn't immidiately have an effect it has to build up for two week to two months for you to see any difference. Until then you need some help. Steroids are bad long term but so is the inflammation that's destroying your cells right now. Short term when inflammation is high, the benefit of steroids outweigh the risks.

[Muff20]

Hi, so sorry to here that your having a tough time. I really hope you pick up soon. You are definitely in the right place here, with people who truly understand how you're feeling. I had to give up work about 5 years ago. Thought if I had a good rest I would be ok. Unfortunately after 5 years still waiting ☹️ I only started hydroxcholriquine a year ago and although it made me feel generally better I the muscle weakness has just got worse. It must be really tough if you are on your own. I haven't claimed any benefit partly due to the fact for 7 years no one could tell me what was wrong. I was trying to convince Drs of how ill I was so didn't think I had much chance of convincing the benefit people. But also my husband is in work and we manage. I have only recently started joining groups and it's been a great support. I really did feel as though I was the only one who couldn't get any medical answers. No I know so many people also find it hard. After 7 years of being ill, hardly seeing anyone, and slowly accepting this condition isn't going away, I have good days and bad days. That's what these groups are here for. Keep going and keep reaching out. Take care of yourself.🤗

[Josiah150767 in reply to Muff20]

Thankyou.

[Hamptons]

No one can do this on their own all the time. Sometimes, we just can’t get on with it because Lupus reminds us it is the greater force. No one has to do this alone, as there are people here who know what it is like and genuinely want to reach out and offer support from a point of empathy and understanding.

You are in a tough spot, new place to live, lockdown and trying to establish a medical team who understand your condition. It would be hard any time let alone in the middle of a pandemic.

Your GP needs to learn your symptoms and about you in order to be able to help you. If you need them call them. I am sure a call to your old team may get numbers for people down here as they will get it.

Stay strong and let yourself know it’s okay to struggle some times, be kind to yourself, update your Netflix membership and just stop. The PIP battle is for another day. However, someone yesterday wrote about being a member of ‘Benefits and Works’? And that helped to fill the form in properly. Want to say it was CecilParsley. Go through yesterday’s posts. Certainly get CAB to help you. However, you need full strength for that battle so get over the flare first.

[Josiah150767 in reply to Hamptons]

Thankyou, I will

[CecilyParsley]

Thanks Hamptons I was just about to suggest Benefits and Work to Josiah in relation to PIP. When I had to transfer from DLA I started to complete the PIP form when a friend recommended the site to me. I will give you an example of how it helped me. One of the first questions is about needing help with medication. I had put none needed. The Benefits and Work site on that question asked can you put your medication up for yourself? ...My fingers are numb so my husband does them in dosette boxes for me. It asked do you remember to take it? ..I have reminders on my phone. It asked are there any medications that you have had bad side effects with..well loads. It asked do you have to take medication to counter the side effects of your medication..yes the morphine gives me constipation and makes me itch. Are there any precautions you need to take with your medication? ..I was on Hydroxychloroquine for eleven years and needed regular eye tests. So by asking the questions I went from writing none to filling in two pages. As for your flare I agree with everything that others have said persist with your GP. No one can be strong all the time. Chronic ill health wears you down and makes you feel isolated but people here are wonderful and we all understand. You are not alone. I really hope that your GP can help you feel more comfortable until you get to the Rheumatologist . Take care xx

[Josiah150767 in reply to CecilyParsley]

Thankyou.