Chronic Pain- Daily chat drop in thread #2 All welcome

[Akire]

Hi all well we filled up the last one and now we have our newish chronic pain boards.

This thread is for anyone who has days , weeks, months at time when get chronic pain flair or lives in pain constantly. There are so many conditions that have pain and often limited understand of how it feels to be living through it. All welcome jump in and feel supported

@Akire it was a phone assessment, and yes they went over everything on the form again. I guess at least the answers will match (and in some cases I'm worse than I was when I did the form 5 months ago so was able to update) I got upset / overwhelmed at the beginning, but she was lovely. Obviously it's all in the hands of the person who makes the final assessment now though. I will hear within 8 weeks. Hope you're doing ok. Hows the pen coming along?

Pelvic pain been better today! Only zapped few times. Been trying track days to see if cycle pattern. Can’t complain at all really. Body seems to be being nice for few days. It shall not last!

Xmas feels upon us quite soon need crack on organising things while good times roll.

for everyone who got through the day

Far too emotional today. I cried so much. So down and upset about everything. No idea why.

On the good sides my DH cooked me a lovely tea and bought me chocolate. (He is a good man and saw my tears) Plus my pain levels are manageable today.

Managed to get another job application in. No hopes of getting any where with it but you have to try.

Have to steel myself to get showered tomorrow and take my mum out for the morning. Looking forward to seeing my mum but the shower is very hard without falling and getting redressed after a shower is near impossible. I endure showers.

Doctor asked me to make an appointment regarding the 30/500 codeine/paracetamol which I use intermittently for the abdomen pain which comes and goes. Usually it is high level pain for 4 to 6 days and then reduced pains for a few days and then disappears for a few weeks or months.

Hospital tests have found nothing, so it is just something I have to live with. What if they take the pills away, what do I do? I am worried as they are treating me like a potential drug seeker, when I just want to manage my pain levels.

@Worrysaboutalot so sorry you have had a tough day today.

Try to focus on the positives of the day - getting a job application in is great! They are so time consuming.....

Perhaps the doctor is just doing a review as standard procedure with controlled meds. Try not to worry too. Much as look forward to having some time with your mum?

I had my neuro appt this evening. Got an mri in the morning and he's given me gabapentin? Anyone used this medication before? I've taken it tonight and am feeling a bit woozy.... but I might just be tired as I've been up since 5:30am!

Sorry you had rough day I’ve had so many tears myself lately. Sometimes it has come out. I had this over last 18m or so crippling stomach pain but no gall stones or ulcer. In end had give up wheat and diary and strangely pork and 95% settled down. I suspect could be to do with endo symptoms as apparently can make things hurt way way out of the area. But so disappointing when say great news results are all clear, high 5. No really not good news when in pain for no reason and hard get support. Have you looked at FODMAP food groups might be with go see if something sets it off.

The 4-6 days every month wouldn’t be much be concerned about. Most likely have to do with everyone on them even if one prescription last you 4m not 1.

Well done on job application should be proud. What’s hard part with shower get in out or staying upright? There is lot to be said for stripe wash when can’t face shower. Or sitting on loo with bowl water or the sink and giving self good wash in essential parts. Or top wash one day then bottom half the next. Sometimes have cut things up in smaller chunks than finish yourself off with completely striping off and drying and dressing.

I am started on 300mcg times three and now I am on 900mcg of Gabapentin three times a day. I felt drunk for the first month but it wore off. Thank goodness. So bear with it.

Did you get any more along with what’s next @ndo4000 ? Not tried meds myself but. It heard particular bad side effects. Do hope they dampen down the nerve pain for you

Thanks Akire

Yes, I have been on the FODMAP diet with assistance from a NHS dietician a few years back. I still avoid garlic, onions, milk and gluten.

Shower wise. I do strip showers, top and tail between showers. I struggle getting in and out of the bath. I do have a bar and a step and a bath board. Plus a low shower head. So I sit whilst I shower. But getting in and out is so hard. Having a shower is so exhausting, I can't do it daily any more. More like twice a week, in a good week .

Then trying to get my bra on sports bra style but not tight. It is a Molke one. Getting it on is impossible after a shower. No matter the talc or towelling dry. So either my DH or one of my daughters have to help me get into it and I hate it. I don't mind help with socks and shoes etc. But my bra!

I have some fabric to try and make myself an easy out on front fastening with a big plastic clip (without a zip or tiny hooks) soft comfortable bra to fit my big bust... It is Friday's project to try and have a go! But I keep putting it off, lol .

Thank you ndo4000, for your kind words.

@Worrysaboutalot I have bought myself a bath lift and it's an absolute god send, I can't manage the shower at all. It wasn't cheap but it's definitely a worthwhile investment!

@ndo4000 I didn't like Gabapentin. I kept having panic attacks and hallucinating giant spiders (that's a very extreme side effect though so I'm sure you will be fine!).

My local council have really impressed me! I was practicing a few stairs with neuro rehab on Thursday and mentioned how much easier it is with two bannisters instead of the one. She said she would put a referral in to the council and they would install me one for free! Thought "yeah yeah I'll be waiting until Easter for that!" Anyway they called yesterday and they are coming to fit it today!

Off for another manic workday, at least payroll is nearly done and I can stop working at a normal time (hopefully)!

Wishing you all a peaceful and pain free day x

@SpookyScarySkeletons that's a worry about the hallucinations!!! I took one last night and just felt a bit spacey. Am a bit worried about taking them and driving, but I have to get to work! They have given me 300mg 3 times a day which by the sounds of it is quite a lot? I'm going to just take 1 a day for a couple of days and try to get used to it. Needless to say, I still woke up at 3am in crippling pain.

I started on 3 x 300mcg dose of Gabapentin. It takes three days to stop the pain when you first start taking it and when you up a dose.

I am now on 3 x 900mcg daily. It works for me and after the initial 'drunk' feeling went away, I have been ok. Just not sure how high a dose they will allow, as every few months the pain gets worse and they up the dose!

I can shower as wet room from wheelchair to shower chair but I find for some reason washing my hair is an ordeal to far as then have dry it. So now only do it about once a month. Honestly it looks fine for most of that and have it up anyway. But the thought of it makes me feel overwhelmed.

I wouldn’t know how to start try make a bra! Sports bras are tricky I don’t have arm power get them on I once got stuck in one for ages half way off.

Great news about the handrails, they know it saves them thousands for every accident where you don’t have rails so cheap as chips to them.

Hope the meds dotn make you fee to rough driving and going to work.

I need a wet room but unfortunate they can't put one in my house so social services have recommendations I move to a bungalow.
Unfortunately there's none available and hasn't been for some time.

I'm only on 100mg three times daily of gabapentin. I'm really sensitive to it. I was previously on pregabalin and 25mg used leave me with one eye half closed. 😂

I've invested in the TENS pen too.

I need a wet room but we have to self fund everything and can't afford it and probably never will. It is lifting my legs into and out of the bath that I struggle with a wet room with chair would be heaven.

As it is our scrapper stair lift is making strange noises which we are ignoring as we don't have the money to mend or replace it. We only got it as we didn't know why I was falling downstairs, as a temporary measure! I doubt I have the mobility to crawl up the stairs and bump down like I use to do.

I need a paid job so desperately. A job that I can hold down successfully long term, that is my hope. I just need to keep chipping away with the applications.

Maybe we can look at a bungalow in the future, that would be brilliant. I first need a job, in order to fund the increase in our mortgage.

It all circles back around to money. Maybe I should get a lottery ticket! on a serious note, I hope I get an interview soon.

Hi everyone, can I join you? I've had fibro for 5yrs and have just been diagnosed with PoTS and small fibre peripheral neuropathy which is affecting my adrenal gland and causing me to severely tremor. Investigations are ongoing for an underlying cause. I also have anxiety, depression and ptsd.

I'm now in a position where I can shuffle around the house in small amounts and have to use a wheelchair if I go out, which at the moment is only for appointments. I'm a teacher and I have t been to work since April.

I'm really struggling to deal with such a big decline in my health over the past year so I would really appreciate the support of people who understand.

Hi @nailsathome you are very welcome to the chat most of us have multiple things that make everyday difficult. It’s so hard when it’s sudden and have to give up work. It’s hard when you have suddenly be all positive and get used daily crap and then by time you need to grieve the old you everyone else has moved on.

Do you have anyone else at home for support? How about ex work friends?

Pen not cutting it today so had give in on meds but think once a day is good balance. I suppose over time the effects will get less and have take more so if I can delay that the better. Or even more better if find out why it’s hurting and fix me!

Naughty naughty me tried to put in an online prescription request in the hope that evil sadistic bitch doctor didn't see it... look what just arrived!!

@SpookyScarySkeletons I've just ordered online too in the hopes I'll get mine sooner.

That’s brilliant lucky you. Mine still not in repeats even though we agreed that’s all I could have and would need long term.
The more stressful they make it they more druggy addict behaviour we end up performing.

@nailsathome welcome and I love your username.

@SpookyScarySkeletons is that good or bad? (Were you looking for 30/500?)

@BackInBits I was looking for anything they could give me!! 😂😂

Evil sadistic GP said I wasn't allowed any more codeine a few weeks back so I put a prescription request in hoping it would go to one of the doctors who understood that the level of pain I am in requires more than just a couple of paracetamol! Thankfully my request went to someone who has more than one brain cell!