Another moan I'm sorry....but.....

[Squeeshy]

So it's been another few months since my last post and I need advice from people who understand cause who understands the pain having this pain in the backside condition than other people who have it.

So new medication list is mmf. prednisone. gabapentin. ampytriptyline. Lanprazole. Adcal tablets. Oramorph. Cocodomol. Naproxen. Now let me first make the point cocodomol and oramorph I do not take together to be perfectly honest I'd rather not take either if I could avoid it.

So pains still no better if anything it's getting worse in my chest back hands shoulder and now my knees are playing up. And add insult to injury I'm feel like I'm starting a flare. Rhumey appointment isn't for another 3 weeks as she wanted all my other appointments and tests done first....well respiratory medicine discharged me after a five minute talk about how tests were negative so nothing they can do for the chest pain and breathlessness apart from a ct and arranging me to go to breathing classes are they for real!!!?? Appointment for dermatologist coming up again and not looking forward to it either as they're saying there's nothing they can do Rhumey isn't but Rhumey team will not let them discharge me. Now at the moment the diagnosis for my chest pain was costochondritis 6 months ago it's not got better its got worse had my physio the other day and was so rude and told me to stop babieing myself it's muscle tightness where I'm not using them no I am it's just I wonder if she ever had chronic pain and joint stiffness and would appreciate people FORCING her limbs into positions that were extremely uncomfortable. And rheumy is saying she thinks theres another diagnosis along with my sle that is causing all this but didn't tell me what any suggestions???

So that's been the last few months catch up and still at a loss someone please tell me something that might help I genuinely feel like I'm losing my mind with all of this!!!

[BonnieSue]

Dear Squeeshy,

I honestly have no useful suggestions except for too darn many appointments and drugs and not enough rest and tender loving care. So here's my solution:

a BIG gentle ((((((( HUG ))))))) and a send-off to bed.

[Squeeshy in reply to BonnieSue]

Awww thankyou sometimes a hug is just the medicine you need x

[misty14]

Hi Squeeshy

Sorry to read your having a lot of problems.

Can I ask have you had the chest pain investigated in A&E?. If it continues to worsen , you should if you haven't recently!. You could have inflammation of lining of lungs or heart and the ct scan will pick up any inflammation. I have had similar symptoms and the same test. You say you think your flaring, could your steroid dose go up till your Rheumy appt in three weeks?. It could help with the joint pain your getting, worth asking your GP if you could do a short course of extra. Hope you feel better soon. X

[Squeeshy in reply to misty14]

It was a&e who first diagnosed costochondritis but that was six moNHS ago now not long had an echo and my ct is it bad that I'm really hoping for something to show up just so I don't feel absolutely crazy. It can go up if needs be just been trying to avoid that as it's the first time in a year iv managed a low dose but needs must as they say thankyou for your reply x

[misty14 in reply to Squeeshy]

For Hi Squeeshy

No it isn't bad to wish for something to show up. I have felt the same and it's what makes dealing with these illnesses so hard because our symptoms are very real and doctors don't always believe us. I hope the chest pain has improved. X

[Jaja2014]

The more stressed I r the worse ur gunna feel in my opinion. Breathing classes It seems like that's not cool but deep breathing is really important for panic anxiety and nervous system. So have an open mind with that and will help with stretching n pyshio.

60mg of cocodamol helps some pain, I take ot sparingly.

Yoga and Pilates help me bt I trained as. A dancer so had previous knowlege.

Naproxen made me so sick!! I prefer natural supplements bt it's expensive when you can't work, make sure ur nutrition is on point, "workout" obv nothing high impact, can do gym on referral bt I pay 42 a month for gym swimming and classes n it's my lifeline in many ways. From bedridden to twice a week, want to make it 3 times a week.gets me out, adrenaline seretonin boosting, social aspect:

Do all you can self help wise. U r unique. Go with your instincts.

I use self massage with aromatherapy.

I really hate the doctors I've seen, finally got a nice one who listens, rhumy and pain clinic was so rude I got suucidal after seeing them: which Is atrocious. The pysch at pain clinic was great though, recommended job kabbat zinn meditations.

Have an affirmation or mantra eg I am happy and healthy (one I used a lot when bedridden)

Also had cbt for managing pain.

Hope something's I've done interest you. I am aiming to get back to work PT but it's not easy. Nothing is easy with chronic pain and brain fog and fatigue.😔 hugs

You are not alone 💗