CHRONIC PAIN - share your moans and achievements

[doadeer]

Hello,

This thread is to share the day to day... The moans, rants, fears, anger of day to day living with pain... And let's be positive where we can too... Little or big achievements.

I've had a tough day with my grumpy toddler who is obsessed with biting, he made my shoulder bleed today 😢

On the plus side, had a great pilates class and managed some tricky stuff despite feeling exhausted... I couldn't have done it unless my teacher was on Zoom telling me to hold it!

Good luck with the work at I’m free lay down and flake away in heat.

Does anyone know how long it's taking DWP to process PIP applications at the moment? I sent my forms back last week.

@cricketmum84 I have actually put on weight since last spring, due to lockdown etc. I lost 6kg before going in for my foot surgery, so the dieting definitely hasn’t been the reason for me, as I do eat meat.

We were definitely in the same situation COVID wise, I was working in care homes and had a series of rashes which were diagnosed as shingles and I was given antivirals (even though I had had that twice before) but they weren’t testing outside hospitals and rashes weren’t a recognised symptom then. I had my first occurrence of hemiplegic migraine after that too.

I’m glad you have applied for PIP. I think it’s roughly 12-14 weeks at the moment. It was never that fast before covid mind. It will get back dated if you get it. Which is something!

Ooh @Akire backdated is good.

@Evenstar ok this is getting really spooky now. I had an awful episode of what they said was shingles back in May last year. It got infected and was incredibly painful!

I managed the washing up without punching my shoulder /neck (it changes the pain I do feel and temporarily makes me feel 'better'). But washing up.... Yay!!!

@BeautifulBirds I do this with my legs!! My husband doesn't understand why I do it but it kinda eases the pain. I've never met another person who does this!

I think the rashes were only recognised as a symptom quite late on, and the ones I had looked similar enough to shingles (which I had already had) to be misdiagnosed. It was out of hours that saw me, and when I saw my GP for something else she looked at a couple more spots that had come up and said she didn’t think it was shingles.

The other thing that makes me think it was wrong was that my GP organised a full set of blood tests to rule out any issue with my immune system, as obviously it’s not usual to get repeated bouts of shingles and they were normal.

How do you feel about the fibromayalgia diagnosis?

Everything is shite for me. I'm on a cocktail of drugs which are playing havok with my bowels. Lovely 🙄.

Any recommendations on stomach liners to help with this?

@doadeer I think I had begun to accept it before I saw the doctor, I looked into it and recognised the symptoms and the pattern of varying symptoms and them being severe or not too bad. I worked in Early Years for a long time which is a very tiring job, but sometimes I would fall asleep when I got home and not feel up to eating dinner. You don’t really know how other people feel to compare do you?

I felt very encouraged that really the latest problems in the consultant’s opinion were due to all the measures I had worked out for myself to feel well being removed. I now know that I will always have to manage it and I suppose that is hard, as you think you might feel better if you have a less tiring job or when you get through the menopause.

I'm not an expert at all but I think over time they might discover a lot more about this condition. It seems very poorly understood. Is it about managing triggers or is every day a struggle?

I am really hopeful that all the money being put into research on long COVID may help with treatments for fibromyalgia and things like ME which have never had much research.

The latest thinking is it may be autoimmune related, some Canadian research recently has considered there may be a relationship with blood sugar being raised but not at a level where tests detect it. I have had considerable improvements in my health on low carb diets.

I have massage, chiropractic treatments and do yoga which all vanished overnight, but I do walk my dogs every day normally all of which he said were effective management techniques. Everything except dog walking wasn’t possible for the best part of a year and unfortunately the weight got out of hand, but I will get back. Even now I am doing a lot better than I was in February when I could barely get upstairs. It is a condition which flares up and then improves, though a flare can last quite some time, it’s unpredictable.

Sorry to hear about your tummy trouble @doadeer, perhaps if you filled out an E Consult the doctor could prescribe something?

It must be so stressful living with the unpredictablity. Even a small amount of yoga or chair yoga would be nice for you.

I'm going to ask rhematologist tomorrow just to check it's nothing to worry about. My case is going to the complex spine panel next week. Im in a state even sitting is hard now. Getting through the days with my toddler is very hard. Oh my. Just praying one of the consultants knows what's going on mechanically with my back and they can fix it

I am hoping to get back to the yoga when my foot is healed, I can’t cope with Zoom I find it very tiring (apparently sensory stuff is part of it too) so hopefully face to face will be back by then.

I do hope your appointment goes well and the team come up with something to help you 💐

@Evenstar

The latest thinking is it may be autoimmune related, some Canadian research recently has considered there may be a relationship with blood sugar being raised but not at a level where tests detect it. I have had considerable improvements in my health on low carb diets.

Spookier and spookier. I've also just been diagnosed as diabetic.

Just prepped my pill organiser for the week ahead 😂 after 20 mins DH goes "bloody hell you still going??"

Afternoon all. Desperate for a sleep but waiting for electrician to arrive at some point before 5. Waiting see if have argument with them over masks. Been so surprised how many don’t wear a mask over last 18m when in and out homes all the time.

Hope they turn up and you can get a rest, this heat is exhausting. I feel if you go into people’s homes then you should respect their wishes regarding masks.

I would just socially distance anyway as I am exempt due to my asthma and would leave it to them what they preferred, but I am not classed as vulnerable and am double vaccinated and I know that is not the case for everyone.

They didn’t turn up. This always happens “oh we had an emergency” it’s not an emergency if it happens every time! Good job I don’t work. How they expect you to just drop everything and take two days of work in one week.

Top it off today across the road have one those chew a tree machines and it’s so loud my ears are ringing with ear plugs and ear defenders. Had close window so no air con.

Sorry to hear that, noise like that is awful and with this heat as well ☹️

I agree about people making appointments, I don’t know how people manage as most employers wouldn’t be happy at all with you taking two days off for the same reason.

Afternoon people! Hope your body is on your side today. Still waiting for electrician to arrive 2h left to time slot.

Sitting on ice block sort use for picnic. Takes hours to melt and freezing!

Ooh ice block sounds lovely 🥵 this heat is intolerable.

Been for my 3 week check up today, stitches out and a lighter dressing, allowed to stand without boot to have a shower, and don’t need to use crutches all the time now. Back in 3 weeks for another check up and hopefully lose the boot then 😊 so a good day today. Wound is looking good too.

I’m so glad you are healing well! I now have surface of the sun bright light In the bathroom. Looking in mirror after shower going be shock!

Gosh very bright lights in bathrooms make me look awful, I went ion a holiday with family some years ago and my late mum thought it was great that my en suite had a magnifying mirror on a stalk with a bright light. I said I was definitely not looking in it!

Light still feels like have walked into operating theatre! Having some pain side effects from one Med annoying.

Been out early for walks which good as not spending money passing shops as they are all closed. How are we all doing today?