Black Dog 17

Thanks Wyllow nicely put.

Wyllow thank you for keeping BD going . It is a much needed thread . Hope you have a better day . Take care everyone especially in the sun as it's due to get hotter.

Thankyou everyone.

Thinking of you all x

Just extremely tired today, so not a lot.

Thankfully a slightly more peaceful mind, even some reading out in the shade. So so relieved to have a good working computer at last...I hadn't realised how important it is for me to feel I can reach out all day then have my comfort music in bed at night. Relieved as it was likely to break down at any point.

Will come in later, wondering how you all are x

Wyllow I’ve been exhausted today. I think it’s the heat. I’m dragging myself round the flat just wanting to sit all the time.
Wondering how *Sweetpeasue got on with her urologist?
Whiff indeed ver hot today. I find it draining.
nadateturbe how are you doing?
Will pop back later.

Doodle I sympathise with you. I have had 4 days just wanting to lie down and sleep all day. GP did bloods but thinks its the M E.
Hope you feel better soon. Don't try to do anything that's not essential.
Sweetpeasue sending hugs, and praying you get some ease from pain..
Sorry I can't say more, but all in my thoughts.

Wyllow Thankyou for starting next BD. I wouldn't know what to do. Glad you have found the new computer makes life so much easier. Ours
has been on the way out for a while so must do something about that. Did you get a laptop?
DoodleYou'd like our temp here today although not sat out in it. Do hope your wrist is a much better today. Sounded like you did too much with it yesterday.
Whiff It's much warmer here today. Only 12 deg yesterday and 19 inland. Thanks for the warning.

How is everyone. Thankyou again for the care and support.
Much pain in early morning so lucky my appt at 12. So tired and doped up fell asleep in waiting room. Well we waited 1 hr 20 mins but I was luck to get appt short notice.
It turns out my guess was right,he passed me on to this new Urologist as he is knows so much more about Bladder probs including IC. When asked if he would do investigative look at bladder he admitted he knew hardly anything about IC/BPS. What he did know was there's no cure. He mentioned he could do Distention just to look into bladder but not sure how long that would be. He said he'd asked my surgery to issue this Elmiron but they'd said they couldn't - too expensive. He went to write a prescription out that I could take to any chemist but didnt seem to know of the side effects (1 being macular damage that some Americans are sueing Drs over) then said new Urologist would write one anyway if needed. He was surprised when I told him op date is less than 2 weeks away and on NHS.
So that's it. I'm terrified really but even though I only wanted short duration distention to look inside I feel the choice is between a Urologist who knows little about it and the more skilled one who is more senior but doesn't allow patients much say. He'd wrote in the Drs letter that if he thought BPS he'd pursue it with 'vigorous treatments'. Not without my consent he wont! Thing is, some Urologists say thete must be 'Hunners lesions' to diagnose IC but American Urologists believe only 10%
of people with IC have them. So I dont know which group he belongs to.
The pain is more than wearing me down, it makes me deranged. and demented. What would you do? What can I do?
I want someone to look inside bladder because I just can't imagine that it can be normal with that sort of pain. Surely, if it is, some sort of nerves must be involved.
Sorry for going on. But the other thing I'm worried about is opiate addiction. Even so what choice do I have?
Thanks for listening. I really don't know what to do for the best.

Oh dear, just seen my post, so sorry.

Nothing to apologise for. I'm sure we all wish we could take your pain away. Hugs xx

Nadateturbe Thankyou. I'm all over the place, even if I dont sound it. You have your painful and debilitating condition too and it is also one that is not fully understood. It seems there is so much the Dr's still dont understand.

Sweetpeasue let’s address opiate addiction first. Your GP is aware of what you are takin and indeed had encouraged pain relief every 4 hours if you need it. Wyllow I believe takes tamadol ( sorry Wyllow if I’ve got that wrong) my DH has been on morphine and codeine both opiates. Someone told my DH if you take opiates for pain then it’s not addiction it’s only if you take them for recreational use that it is such. When the pain has been dealt with then you can start cutting down gradually like HVDY with the steroids. You can’t live with constant pain you need pain relief.
Only you can decide which path to follow and I fully understand your reluctance after all you’ve been through. If your Urologist today thinks the other one has skills he must have some reason for that belief. Maybe the other one just doesn’t have a good bedside manner.
I pray that you will make the right decision for you. X
As nadateturbe so rightly says, no need to apologise.
Nadateturbe ME is so debilitating. I’m glad your GP is doing bloods. Does he check your iron levels? Certainly the iron DH has had helped him .

Doodle I must have read something wrong then as I thought it took approx 5 dys of using opiates, as in Oramorph and Tramadol at max level to risk being addicted. My GP wants me to take both 4 times a day for 2 full dys. Not sure if that's to break pain cycle but I think if I took them like that my bowel would be solid. Although I took 3 doses of both yesterday I would rather take them as needed, though of course, waiting to see if pain subsides before taking them is a gamble. Thankyou for putting my mind at rest.

I do find the heat exhausting but it slows me down and since I need to rest it not push into something yet again too much for a day, helps as bit. It didn't stop me having a very bad panic attack early evening but come out of it.

Very much wondering if I'm up to moving at all this year the amount I can do and my usual doubt about whats best.

You've had a lot on Doodle it doesn't surprise me your body didnt want to do much today except sit and not move much.

Can you actually sleep much in the day nadateturbe or just go to bed?

Yes Sweetpeasue its a Mac book pro. A recon 2017.
I understood your post very clearly and the dilemmas of the choices. It does seem a "look in" could be helpful.
it would not just be the pain that made me feel demented, it would also be the not knowing. And that treatment path isnt straightforward. You'll need to see the Bloke who Knows but Is Bossy you can always say, "NO".

Yes I take tramadol PRN, ie not constantly. Yes I take extra laxatives bisocodyl and Laxido up to 6 tabs a day of B

To get hooked I believe you have to take them constantly over some time.

Therefore I'd go for the doctors idea, because

I think he/she has suggested it to give you a guaranteed 2 days break from pain that you can count on to give your poor heart and soul a rest

After that, as needed.PRN and dont wait till the pain is acute - if you know its coming on, nip it in the bud.

I take extra diazepam which isnt good for me when things all get too much MH wise

Sweetpeasue give yourself a break physically x

HVDY Just realised your last post is on prev BD. Not sure why that's happened. Hope you are ok. How have you been today?

Sweetpeasue i think opioid use is safe if it’s for pain relief and used correctly and not misused. I questioned this with consultant when DH broke his ribs in his back and was on high levels of pain killer. He was the one who said it was not addictive if you took it for pain. Maybe he meant addictive in a different sort of way because you can certainly get used to it.
I wouldn’t have thought your Gp would prescribe a dose that wasn’t ok. Perhaps she/he is, as you say, trying to break the pain cycle and to see how much pain relief you need to help your symptoms. Yes constipation is a big problem but you could take Movicol and eat some raisins which are helpful.
I think the five day thing might be the point at which you can’t just stop taking them but have to wean yourself off gradually.
Either way, being in constant pain is not good for your body physically or mentally.
Wyllow yes the heat is exhausting. With regard to moving, I suppose it’s a case of weighing up how much being where you are with all its reminders weighs you down vs the energy required to tackle moving. It’s a difficult decision.
HVDY I will nip back as I forgot to check the old thread too.

HVDY if you don’t turn up soon I will have to leave a trail of cake crumbs for you to follow 😊

Wyllow The panic attack sounds nasty. Was it because you were too hot? Like others I dont like the heat either.
It's difficult sometimes to get the laxatives right, it depends. on meds that day and type of food eaten.

Yrs I'll have to go with new Dr though he wants to do full distention. Some IC 'treatments' are quite invasive but I can say no.
Thanks for reassurance about PK. Think Id read the first little bit on Mayo med website and not full article.
Hope you have a good night.

Doodle The GP I spoke to on Friday was so nice. Ive' seen' him when 'my' GP isnt there which means Ive had more with him than my own. He's a gentle spoken and kind man who I think I'll try and see in future. I have Movicol on prescription and I've found it good, like your DH.
Hope you dont have to have wrist splint on much longer.

Hi all, not been on the last few days but I have caught up this evening. I really would like to post every day but some days I’m just too exhausted even to read. My days are busy and I usually don’t get to relax until around 9 pm and then decide I must go to bed! We don’t get to watch much on TV at all. We’ve come to our caravan today. Not done so much, had a nice walk then I slept for about 2+ hours. My life just got a bit busier too as if I need that! DH has said we need to sit down and talk finances and see where we are with regards to retirement. That has specific issues for me but that’s another story. Anyway, enough about me, my problems are nothing compared to some of you. I just want you all to know that even if I don’t come on, I care, I really do and think about you all everyday.
Sweetpeasue I’m sorry you have such difficult decisions to make. In my experience with specialists, they don’t re-refer unless they need to. I think it’s a big thing for them to do - in effect, admit someone else is better. We’ve had it a few times with my son’s care and although can be upsetting, ultimately it’s been the best thing. I suppose some are just more knowledgeable in certain areas than others. Take your time to mull things over, ponder and process and I’m sure you will know what’s going to be best for you. You are so kind to everyone else, such considerate and caring posts, you deserve some support right now and I really hope you get there in the end. I hope you are not in pain this evening and you manage some rest.
Wyllow you too seem to have had a difficult time. I’m sorry for your grief. I’ve learned that grief is not just about bereavement, it’s a loss, whatever loss that might be. You will get through, it’s just different and takes time. You too are kind and caring, as are all on here, and with support, you’ll get through. Everyone on here is rooting for you.
I’m sorry for not responding personally to everyone but I hope everyone else is ok and are having the best evening possible, wishing everyone a restful night. ❤️ to all.

Sweetpeasue I couldn't say better than the advice from Doodle and Wyllow3.
I start every day with 3/4 warm prunes before porridge. But a laxative is a good idea. Apparently constipation makes IC worse.

GP is doing lots of tests, nurse wrote me a list. Our doctors are very good.
No matter how tired I am I can't sleep during the day unfortunately.

Doodle

HVDY if you don’t turn up soon I will have to leave a trail of cake crumbs for you to follow 😊

😁

I know any tablets you take you can be addictive. I know from the start I addicted to mine but I made the choice to take them . I have been in pain all my life first just in my legs . Then in 1988 it settled in my left arm and left leg. Like many here have constant pain and need answers to why and help with it and the important question can you be cured from the pain.

In my case no but on the plus side I found out last year what's been wrong with my my whole life. And know all that I have been through and going through is normal for HPX . Having others to talk too through the Facebook group and having all my questions answered means I am no longer alone . I am not weird but have HPX. Plus finding out in 2020 I was born with a hole in my heart made me laugh. I have had 2 minor and 3 major operations all with a dicky heart and no one noticed.

Moving not only gave me my life back but answers to questions I have been asking all my life especially since 1988 when I got worse.
So never give up hope any of you that you won't get the answers you need. I was 63 when I got my answer had 2 birthdays since then. But my neurologist put me on Clonazepam in March 2020 and haven't had a limb jerk or seizure since after 32 years of not having control over my limbs it's like a switch had been turned off. But the sad thing is my husband didn't live to find out. He didn't give up hope or trying to help me find answers even when he was dieing.

Living with physical and mental pain is draining and you know everyday it's the same . But you face it as life is well worth living even though some of you

Just found the new thread .
SweetpeaSue What a dilemma. The new doctor sounds good, but is he experienced enough? Only you can decide about bladder distension. Not an easy decision to make. As for the opiates, I think as Doodle said, you'd perhaps need to wean off them. You clearly cannot carry on as you are, and you can't keep being in so much pain.

Wyllow, Doodle, Whiff, nadateturbe This heat is tiring, isn't it? Hope you've all managed ok.

Took Son1 and girls to a place called Highfields - Son2, pregnant GF and her girl met us a bit later. Took a huge picnic. There's a playpark, boating lake, crazy golf, and woods there. Too hot to do most of it, but the kids all played football with sons. Had ice creams, drinks, etc. A good 8 hours out. Hope all BDers have a restful night x