suffering a flare up of symptoms

[WhatSayU]

hi

I’m suffering a flare up of symptoms and feel isolated and lonely after being seen by medics 3 times in 3 days

I would appreciate anyone sharing their experience of feeling unwell with horrible symptoms and despairing at numerous medical appointments - I have to see my gp tomorrow and currently feel exhausted trailing about after being sent to medic after medic despite me first seeking help at pharmacy. Sorry for the ‘Debbie downer’ here just looking to share with anyone who understands

Thank you 🙏

[puffyface]

What symptoms are you experiencing? Sjögrens is a horrible disease which some completely misunderstand to be only dry eyes and mouth. It can affect everything and the fatigue is extraordinary. Some mornings I wake up and feel as if my body has been in one of those car crusher machines. I have appalling rashes, joint and muscle pain, peripheral neuropathy, lack of balance, brain fog, digestion and lung issues amongst others and SS is often accompanied by another AI diseases. Rest, avoid stress and properly look after yourself is my advice. Don’t say yes to too many things. Most doctors simply don’t understand enough about it, so try to find one that does. I hope you feel better soon 😊

[WhatSayU in reply to puffyface]

Thank you puffy face - sorry late reply things got from bad to worse - I saw assoc dr to ask for increase in bp meds as hospital had asked me to n bp very high again - I told her I had my readings, had done last bp hr ago. Told her I was utterly exhausted - whatever I said was ignored as she told me I couldn’t have meds unless she did bp. I rolled up my sleeve. As expected it was too high I told her I don’t want to be here I’m unwell it’s high with stress.. suffice to say I did eventually get bp med increased after she insisted on 3 checks! That afternoon I tried to rest went to turn off my phone noticed voice message from surgery thought awe checking I’m ok. I’m so naive - practice manager told me she going to write 1st warning on my notes as (we) were rude and assoc gp upset. My daughter had accompanied me and also tried to tell assoc gp I was unwell in pain n bp was managed on new higher dose but hospital sent me to her to get higher dose on repeat n also get more that day as had doubled up - hope that makes sense.. none of the last week of 4 visits 2 to AE 1 to hospital clinic n one to assoc gp make sense to me… passed from pillar to post - I’m still unwell now feel getting punished for medics feelings..

I can’t take another day of the poor service of some medics - n have not felt so lonely in my life…

[puffyface in reply to WhatSayU]

Oh no. I have just seen this…and can’t understand why people who are supposed to help us, just don’t understand. Where do you live?

The best thing I ever did was find out the best SS specialist I could and pay once to see her privately. She put me on her nhs list…and although I don’t see her very often…at least I know that she understands how systemic this disease is, and will allow me to choose what meds I want. The gps simply don’t know anything other than dry eyes and mouth.

My best advice is to ensure you are taking a good quality vitamin D, rest and look after yourself. The British Sjögrens Association (BSSA…look it up on the internet) is very good and has lots of helpful advice.

Please don’t be lonely. If you know how to DM me (I don’t know…but lots of people do it)…I think that we can email, and I am always here to chat.

Sending my very best wishes, 😊

[WhatSayU in reply to puffyface]

Thank u that’s very kind - our daughter and ny husband are dealing with the appalling outcome of the consultation with an associate gp. They have emailed that this was a serious issue not handled well and asked for policies and any evidence for the disgraceful conclusion the practice manager came to. Telling them it needs an investigation proper; not just a manager laying down the law without speaking to all parties present.The family realise I was just about coping with 3 hospital visits and 2 surgery visits all in one week. Therefore, they are now going to be advocates in taking pressure off me and dealing with such people, on my behalf.

I am getting tired of making excuses for poor behaviour of some people and will continue drawing on my faith (especially that truth will prevail and bullies will be held to account), and family support.

On a happier note my friend took me to an exercise class whereby instructor attends to individual needs of client - I could barely believe he understands sjogrens! I managed 30 mins light exercise and felt more upbeat.

I was previously a patient in London, now I’m half hour from Birmingham and found it was too hard travelling to London. How I miss that team.

My current rheumy and endocrinologist do their best then surgery does not prescribe what they advise, despite me asking and taking copy letters.. I think that says it all really - the surgery follow own rules believing they know best. They don’t listen n act on consultants advice so I shouldn’t be shocked when they ignore my voice too. It’s is time I changed and my family have brought me the necessary forms.

To everyone on here that has shown support, empathy and kindness please know, each of you helped me start rising from despair and from a very lonely experience. Thank u 🙏 all so much xx

[puffyface in reply to WhatSayU]

😊🙏

[SusieW2 in reply to WhatSayU]

That is unconsionable! You are miserable and in pain and you're treated like an addict finagling for a fix! Do you have a medical board that you can complain to? They are the trained professionals and should be able to better manage their responses. So sorry...

[Bosnel]

Sorry to hear about the flare up. Hope your gp has a better understanding of what you are going through than the medics you’ve seen. I find it frustrating to have symptoms that you just can’t do much about- wish there was a tablet to get rid of fatigue! It’s tiring being tired and achy and uncomfortable 😔

Thoughts are with you, hope things ease for you soon. Be kind to yourself 😊

[WhatSayU in reply to Bosnel]

Thank you 🙏 Bosnel - please see the reply I sent to puffy face

[SusieW2]

I'm sorry. You sound so miserable and frustrated. I get angry when told there's nothing more to do or to take heavy drugs with risky side effects. My SS symptoms are stable but now I'm dealing with dentures that are painful and don't work well. Going in today for yet another fitting. But I'm not hopeful that it will help much.I agree that you need to take care of yourself but would encourage you to get up and move around, whatever you can for as long as you can. It's critical. Also drink plenty of fluids to flush out toxins. For fatigue, my Naturopath just encouraged me to take a larger dose of Vitamin D, up to 600 IUs. But ask a professional first if you are to take more than the recommended dose. It made a big difference when I started taking it.

[WhatSayU in reply to SusieW2]

Thank you 🙏 SusieW2 - please see reply sent to puffy face I do take 1600iu vit d prescribed from endocrinologist n yes they do help - miss them if out of stock joints ache

[HollyHeski]

Oh how I emphasise, my ss is secondary to APS, I feel I have been in constant flair for the last 8 mths!Oh the fatigue 😩

The pain in my hips esp - so I checked all my bloods, daily iron a bit low, ferritin, B12 etc all at minium but OK.

Like all of us - we just cope.

Very frustrated with local GP but hoping get a bit more medical support next Jan when I have next appoitment with specualist.

This forum gives us all hope and esp support and a good ear xx

[WhatSayU in reply to HollyHeski]

Thank u 🙏 HolkyHeski - please see reply sent to puffy face

Think you may be into something re low folate as had very low years ago when gp phoned me at work saying way too low prescription waiting for me n I did improve then