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

Hello, @Akire. I have severe gut pain now too, especially stomach and upper right quadrant. Classic gall bladder stuff. Abdominal ultrasound and abdominal & pelvic CT scan are 'normal', however

So I'm guessing it's the hypothyroidism or a side effect of the biologic I'm on. BIG SIGH. My GP couldn't care less, unfortunately, about my hypothyroidism and whether the treatment that they prescribed is even working. And they're so slack on blood tests.

It's just one thing on top of another.

I can so relate I’ve had scans on gallbladder and stomach all “clear” had give up most foods which has calmed down some of pain but no clear knowing why. On top of everything else it’s taking biscuit. I do realise one or more pain condition you can’t reliably trust your body when screaming in pain you are supposed to work out this isn’t really emergency just fake pain but when you don’t know there is still niggle it is something serious. Pain is body’s way of shouting take me seriously.

Hard to keep going back and asking help and not getting much support or pain relief. This has really knocked me
After 20y chronic pain but was managing and used to it as best I could. I felt like still had some limited quality of life. These last 18m however I half think sod it I don’t want live next 20y like this if this is all that’s an offer.

Oh god, I'm the perfect storm of autoimmune diseases and medication side-effects!

Diet-wise, I'm on Day 20 of very low fat, low FODMAP eating. It does seem to have helped. But my gut is so, so sluggish.

The biologic (Imraldi) has definitely helped with the pain of psoriatic arthritis. But I still need codeine and NSAIDs for the osteo in my back. They're not cancelling each other out!

My skin (psoriasis) was stable but I can see small spots appearing. I think it's the stress of the searing gut pain.

Hi everyone I'm having something new at the weekend. A lidocaine infusion, it takes an hour has anyone had this before?

No, @doadeer, I've never had that. Have they given you plenty of info in advance?

It's to try to switch off my pain receptors which are hyper sensitive. I currently wear lidocaine patches on my back

Hello all. Just found this thread and checking in. Have two rare autoimmune syndromes (my neurologist swears that’s “normal”; once you have one, another often follows). But these two together is REALLY shite. Right now, I have to pass tests before I can start a new medication because the vasculitis caused by one of my conditions is worsening.

@doadeer I had a radio-guided lidocaine (plus small amount of steroid, but not a “steroid injection”) injection, into a damaged nerve, and it was really helpful, but I’m not sure about an infusion? I do hope it’s helpful!

I’m bricking it it because I have an MRI tomorrow for my lower back; they think my “inflammatory condition” might be what’s causing the pain. But if I lay flat on my back, it’s so painful and I lose feeling in my limbs. And I’ll have to do it for 45 minutes? DH is coming with me, to help me get off the table the “right” way and then hobble out of the hospital. I’m so scared of the additional pain.

@SpindleWhorl Re: skin sores caused by stress pain - is there anything more unfair than MORE symptoms caused by the pain you’re already in?!? Absolute bollocks. We should refuse to stand for it.

Ohhh I've had a very long mri for 90 mins of my pelvis and lower back, they will put a bolster under your knees and support you as best they can. Don't be afraid to say if you need them to make adjustments I'm sure you shouldn't be lying in agony. Good luck!

Hope the new thing does the trick Doadeer. Welcome to thread @RightYesButNo! Still utterly drained here, pain not as awful but feel quite traumatised. So hard knowing any given time you will have days weeks months of horrific pain and then you get no extra sympathy or support. Bit like being kidnapped tortured and then let lose two weeks later. It doesn’t get any easier makes
Me feel really disconnected with everyone. Not sure of technically terms but sure there are some!

Because no one can really see it and you are long passed any sympathy stage saying pain is bad doesn’t really cut it.

@Akire

Hope the new thing does the trick Doadeer. Welcome to thread *@RightYesButNo*! Still utterly drained here, pain not as awful but feel quite traumatised. So hard knowing any given time you will have days weeks months of horrific pain and then you get no extra sympathy or support. Bit like being kidnapped tortured and then let lose two weeks later. It doesn’t get any easier makes Me feel really disconnected with everyone. Not sure of technically terms but sure there are some!

Because no one can really see it and you are long passed any sympathy stage saying pain is bad doesn’t really cut it.

Actually, you may be surprised, but this is considered illness-induced PTSD. There are a few types of PTSD (post traumatic stress disorder, just in case anyone didn’t know, which occurs after a stressful event). But illness-induced PTSD is different because it’s ongoing (like complex PTSD), but shares more symptoms with uncomplicated PTSD. They think 15-35% of people with chronic pain have illness-induced PTSD, and it causes the exact feelings of social isolation you’re describing @Akire. Take a look at this (very easy to view and quick graphic, if you’re having a pain day): www.scleroderma.org/site/DocServer/ptsd.pdf?docID=21136 and see if it helps put some of the feelings into words.

@doadeer Ha. Now I’m bricking it more! I thought it would be 45 minutes! If it’s 90… shite. But I will definitely do what you say. I’m so good at advocating for myself usually, but for some reason during these tests I think I just have to put up with it and get it over with.

I hope everyone is having as good a day as possible, and if your infusion is soon, deer, that it goes well.

Thanks for that that’s very easy read. Yes had come across the term but didn’t want read loads depressing triggering pages. It just be another thing that no one will actually say you have. Therefore no support. I live on my own so although I do have friend I can say I’m having a bad day too there are limits to what support a text message can bring.

Brought it home when had lots cancer type tests last 18m all clear. But I was more stressed over ending upon hospital in pain, being ignored, being talked to like rubbish and not been given pain relief x100000 more than I was worried about being given a terminal diagnosis. That was thing that kept me awake at night.

My pain has improved a bit in the last few days giving some much needed relief. Apart from at night... I often have to take painkillers so I can sleep. I'm almost ready to send off my PIP form so I'll see what comes of that.

Well done on doing PiP form hope you get a fair response. Though imagine have wait 2-3 months find out if need medical or not

@RightYesButNo
Oh sorry didn't want to scare you I've had two, first one was 25 mins, second was longer as they were covering a big area and it was private. It wasn't anywhere near as bad as I expected

@doadeer I think it’s partially that it’s unknown. I should have gotten a letter in the mail with more info, but they had an opening sooner so I just got a short confirmation text (for an appointment I hadn’t made, lol) with the date so I just know it’s “for my back,” not if it’s pelvis (I have lower back pain), whole spine, 40 minutes, 25, 90, etc. I know “the MRI basics” since I’ve had several (no metal, no pacemaker, etc) but yes. Ok, it’s about an hour away now; wish me luck!

Hi all. Quick pop in as waiting for phone call from physio(first one) I have read a few posts so far.I am glad this tgread is here. I have had back issues since around 13 yrs old now 52 but just got on with it with the odd blip. Now,however I am off work for few weeks as cant stand steaight. I have lower facet joint arthropathy and had juvenille osteochondrosis at 13. Basically everything hurts and has for years. I am having a reduced hours contract at work so 3 days instead if 5 as it might be made worse through constant regular exertion but am so worried about money. Also if I will be able to even work the 3 days.

Soz re typos. Also I am always tired. Have been since my early 20's!

Hi @Doobydoo you are very welcome. There are lots of us around, when a thread gets put on main boards lots of people come out of the woodwork but yet find way over here.

[quote RightYesButNo]@doadeer I think it’s partially that it’s unknown. I should have gotten a letter in the mail with more info, but they had an opening sooner so I just got a short confirmation text (for an appointment I hadn’t made, lol) with the date so I just know it’s “for my back,” not if it’s pelvis (I have lower back pain), whole spine, 40 minutes, 25, 90, etc. I know “the MRI basics” since I’ve had several (no metal, no pacemaker, etc) but yes. Ok, it’s about an hour away now; wish me luck![/quote]
Let us know how it goes, we will be thinking of you and hoping it's smooth! 💐

Welcome @Doobydoo !

I haven't heard of lower facet joint arthropathy but I also have facet joint problems. Does anything help at all? Sending you gentle hugs

I've got my annual review with a new Rheumatology consultant next week. I just had a text saying it's a phone call. Anyone know how that works?

Hey can I join ? I have hyper mobility, osteoarthritis and fibromyalgia- I also suffer with BPPV which is quite a problem at times- I tested positive for Covid today and my joint pain is through the roof! I’m just so fed up with the constant pain- nothing seems to help. I work full time in a stressful NHS role and I’m struggling. Sorry for the moan, I’m a really positive person usually- honest!😵‍💫😀

Thank you all. It is my neck. I have lower back issues as well but havent had any xray on that. I think I have down played it for years but now I can't. Have physical appt with Physio tomoz so will see. I hope you are all trucking on today. I know I am lucky in many ways but it feels scary re work and home life at present.

@Inforapenny65. Poor you! I have vestibular migraine..very scary at times...lovely vertigo. I work in NHS too. New position only been in for 6 months! I hope you get some relief. I reckon the people on here will be very helpful and knowledgeable.

@doadeer..sorry it is facet joint arthropathy lower cervical spine.