ongoing issues

[Deeb1764]

it’s been a tough month this weather is making the fibro non stop but in turn my RA has also kicked in within the joints so I am creaking away like an unoiled motor and even hubby went you need some calm weather!

Trip to GP yesterday and he looked at me and said I know you have a lot going on what’s the top 2 issues as we can’t do all over!

So we went for lungs/heart and horrendous heat and sweats.

The lungs and heart are constantly flaring so we have gone for control of potential acid reflux which is triggered lot of stuff but this is potentially being triggered by my lungs or lungs by acid reflux. The heart throws a curved ball in when it gets too much but hey got my GTN spray for the bad moments. He also changed one of my inhalers as I felt they were not doing that much. Plus I have a wheeze going on in the lungs.

As now on metformin for diabetes 2 (though last test was good) he is wondering if this is stripping me of B12 so blood test to check. I remembered when I was being diagnosed for RA this was one of the first things that happened. Horrendous sweats and it pouring off me and headaches.

He also changed my anti acid for the tummy to see if this helps as well.

Back to see him in a month for a review

He did ask when he came to get me why was leaning on my stick with head down and eyes shut. I said your waiting room too bright and doors banging and radio on and my fibro sensors are going crazy! His reply was as never thought about our waiting room causing issues like this!

[J1707-]

oh tell me about this bloody weather .. fibro in control and RA rearing its head too . Yep I’m having major sweats too. Can’t believe how much the weather controls us. Sensory over load often dismissed but one of the reasons I gave up work . School children noise I use to love but it became torturous.

[Deeb1764 in reply to J1707-]

Cursing like a trooper past week

[J1707- in reply to Deeb1764]

Any new words would be much appreciated 😂😂

[Deeb1764 in reply to J1707-]

Will inbox them

[Runrig01]

Sorry you’re struggling too. I’ve had a bad flare of my AS. I put it down to stress of hubby being made redundant and potentially moving to a new area. Thankfully he’s secured another job with a small scientific company, so we can stay put. He’s one of the few 300 that’s not having to move. Anyway pains continued along with dreadful night sweats, which I blamed the flare for. I had a chest infection early Dec and was left congested and coughing although not so bad. Had bloods done, on Wednesday and Gp rang the next day to say my white cells were very high. He’s put me on doxycycline, and these last 2 days I’ve felt more like my old self, than I have in a long time. Obviously the pains continue, and will g do I whilst off my immunosuppressants.

You know you can ask for a double appointment, if you have several issues to discuss. Although I get, it’s difficult getting appointments at the moment. Hopefully heart and lung issues will settle. Hope you have a happy new year, take care 🤗

[Deeb1764 in reply to Runrig01]

My surgery fab I knew as Xmas only a small appointment and if I need a longer one they sort so I know lucky

[Runrig01 in reply to Deeb1764]

👍🤗

[smilelines]

❤️

[Kati66]

Hi Deeb,

I don’t think many people understand the sensory issues that come with Fibro, as well as the pain and fatigue. Smells are also a big one for me, such as cooking certain foods, perfume, plastic wrapping, newspapers etc. It’s good your GP took notice of your issues with the waiting room. Glad to hear he is keeping an eye on you and acknowledging you have multiple conditions. Xxx

[Deeb1764 in reply to Kati66]

My Mum struggles with the sensory side when we go to see her she rushes to hug and kiss me which is lovely BUT I hate her to show her I am flinching too. Yes smells so overload at the moment as well. My brother got hubby a new body shower set and wow I thought I was going to throw up when he first tried it 😂

[Kati66 in reply to Deeb1764]

Oh I know what you mean, my husbands daughter bought him some old spice for Father’s Day this year 🤦🏼‍♀️🤦🏼‍♀️ I had to put the quilt over my face when he came in from the bathroom and it strangely disappeared never to be seen again!! 😂😂😂

[cathie]

Sounds like a very constructive appointment and sensitive GP

[cyberbarn]

"I said your waiting room too bright and doors banging and radio on and my fibro sensors are going crazy! His reply was as never thought about our waiting room causing issues like this!"

Does your surgery have a PPG (patient participation group)? Every surgery is supposed to have one and when I took over one as chair, the first meeting I held where I insisted that the senior partner and practice manager was there, I did a walk through of the surgery from the patient point of view. Sometimes Healthwatch and other groups do them, sometimes called 'enter and view' or '15 steps'. It can show just how bad waiting rooms are as well as access difficulties.

So if your surgery has a PPG (and all have to have one) it might be worth getting in touch and telling them about your experience in the waiting room.

[Deeb1764 in reply to cyberbarn]

I get a patient surgery after each appointment and I always mention it here but might also contact the group too thanks for this 🥰

[Lolabridge]

Sorry you’re suffering so much atm - agree this rubbish weather really not helping. Your GP sounds as though he listens and really wants to help. So hope the latest meds changes make a difference. X