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!

@SingToTheSky
That’s really interesting on the stiff zebras thing.
I don’t classically meet the required number on the beighton score... only 3 but assumed EDS due to having pots and Mcas.
However I have very stretchy skin, look much younger than my age, very quick labours and no tears etc.
Anyone else like this?

Also on the PP poster point about no help. I feel like if it is a condition that people know about you’re going to get support, a specialist nurse for example.
I get no support for any of my conditions really. Just had diagnoses privately as was so ill. But then you’re on your own.
Really think all the chronic health conditions should join up and lobby govt for chronic health clinics to get support- otherwise it falls to you to manage each condition in a silo, if you’re even lucky enough to get ongoing support from a consultant from each condition.

Also does anyone have children with learning or emotional difficulties? My DD has significant needs although very high IQ can barely write.

Not many people understand this - certainly no one in the ‘system’ seems to - and despite being so unwell I’m trying to fight on her behalf too. Layering exhaustion on exhaustion frankly.

Completely agree with you about the lack of support for rare conditions @Namechange600. My youngest child was diagnosed with something nobody has ever heard of about 11 years ago and has to have a special diet as a result. In those 11 years we have never met another real life person with the same thing and even the online support group is based in the USA. Though they're nice enough people I gave up on the group as the healthcare system is so different I couldn't really benefit or contribute.
I've also given up trying to explain it to people and just say he is allergic to the various foods he can't have. Though even that is fraught with problems because he also carries an EpiPen for a variety of IgE mediated allergies, but that won't help his non IgE reactions - even my husband struggles with understanding that. Sometimes it feels like DS and I are the only people in the world that do understand.
Sorry, going off topic there as it's not a pain condition, but just wanted to say that you're not alone in feeling alone.

I’m struggling with the lack of support and it really hits home times like now when I’m doing pip renewal. I don’t have evidence to submit because I have no specialists. I was discharged literally minutes after being diagnosed with fibro for example. I just get on with being how I am, I forget how limited my life is tbh

Name both my older two are autistic (like me) and we are trying to get them assessed by nhs for adhd (I’m dx with that too). They have a lot of learning issues between them, DD1 is back in school now and struggling but DS is home educated. They (along with 3yo) are fantastic lovely kids but being a parent to them all is pretty relentless!

You could submit receipts showing what sort of things you have to buy and how often. You might not think many but then I look at my Amazon account over the year and they seriously add up. Least you can say due to receiving PIP I am able to do x y z.

Few years ago I did mine had lots of recent assessments but now nothing. Not due for few years but can’t see the evidence changing. I suppose you could pay for a private OT assessment to at home?

Thank you, I guess we might have to consider that sort of thing but I’m not sure how well received private medical stuff is.

Tbh we really need to sort a pip application for DH as he is so severely impacted by his issues now. And sometimes I feel like I’m ok although when I think about it I know even on a good day I’m nowhere near as capable as most people.

I’m expecting to lose the mobility element myself now as I can sometimes walk further and could even do a bit of exercise - but then for the last few months I’ve barely left the house. So who knows. I hate that it changes so much as my memory is so crap anyway I’m scared any inconsistent descriptions etc compared to last time will make them think I’m lying.

Do they compare directly to my original form when I renew? I had all the content saved but that laptop died so I don’t have it anymore

@MrsAvocet you’ve captured the loneliness so well. People just don’t understand and have no time to either. My DH doesn’t have much of a clue either. It’s a balance between letting people know but in a non scary way, even then once you’ve told them they mostly won’t ask again. Hard to explain the complexities too. Definitely makes for feeling alone an awful lot. Xx

You could try some of the free PiP checkers where you tick box for descriptors and tells you what you may get. I don’t think they even compare to the form you sent in this time. My last face to face at home she asked me exactly same questions on form. I was like do you not have that other pile of paper work on your lap?

@SingToTheSky

I’m struggling with the lack of support and it really hits home times like now when I’m doing pip renewal. I don’t have evidence to submit because I have no specialists. I was discharged literally minutes after being diagnosed with fibro for example. I just get on with being how I am, I forget how limited my life is tbh

Name both my older two are autistic (like me) and we are trying to get them assessed by nhs for adhd (I’m dx with that too). They have a lot of learning issues between them, DD1 is back in school now and struggling but DS is home educated. They (along with 3yo) are fantastic lovely kids but being a parent to them all is pretty relentless!

Our 3 DS are all Autistic. Eldest has bad anxiety and youngest has ADHD as well and was recently diagnosed with a rare disease that is causing physical damage to his body. My kids are lovely too, but it is never ending and I'm so exhausted and in so much pain. And now we have a new diagnosis and new disability to add to mine and the kids. I have chronic pain and MS.

Apparently having children with SN is one of the factors that correlates with a higher risk of stuff like chronic fatigue/pain.

Thank you for PIP advice. I’ve done the census now (only took half an hour for the whole family) so really have no excuse not to get on with the bloody thing

@Namechange600

Evening all So I was diagnosed with MCAS on Friday. Probably a systemic bladder infection too (thickening of the bladder wall). So in all I have - pcos/severe endo /adeno/Eds/pots/Mcas/ thalassaemia trait

Does anyone else have this all going on?? Any advice?
I need to get my salt tablets for pots started, then going to start the Mcas tablets (antihistamine plus others).
On pain relief for endo and adeno for the last few years-codeine and naproxen.
Vitamin D deficient too
Generally anaemic due to trait
Need to sort my diet and drop gluten citrus and nightshade fruits to low histamine
This all feels a bit much to handle. I am so tired and in pain a lot.
Thanks for listening.

Here is a list of some low histamine foods (I had to do it to sort out my eczema-ironically it was starting an immunosuppressant that helped the most but the low histamine diet did help the itching)

Oats
Eggs
Nut/rice milks
Chia, flax, hemp seeds
Salmon
Soft/young cheese
Asparagus
Quinoa
Sweet potatoes
Brocolli
Cauliflower
Kale
Chard
Sweetcorn
Ricecakes
Elderflower cordial
Most fruit

Avoid (high histamine, avoid during elimination)- marmite, sourdough, peanuts, mushrooms, bacon, shellfish, smoked fish canned tuna, aged cheese, olives, sauerkraut, pork, tomatoes, anchovies, parmesan, chocolate, dates

These are ones to also be careful of as they are histamine liberators: i.e. make histamine foods release their histamine- milk, bananas, strawberries, eggs, citrus fruits, seafood, peppers, beans/lentils, potatoes, legumes, peas, curry spices, nuts

There are also histamine blockers, which are good to include regularly: apple, watercress, spring onions, bean sprouts, pomegranate, black rice, herbs-basil, thyme, rosemary,sage, turmeric, tarragon, tea-mint, camomile

There are also DAO boosters (DAO helps metabolise histamine)-avocado, eggs, brocolli, salmon, spinach, walnuts, white beans, mackarel, red meat, livers, almonds lactobacillus plantum

Lastly food that contains quercetin, which has anti oxidant properties and good to include in small amounts- apples, dark cherries, berries, cocoa, buckwheat, raw red onion, tomatoes, peppers, olive oil, citrus fruit, cranberries, cruciferous veg, leafy greens, black and green tea, red wine.

It's all very confusing! Good luck. I really like dried pea pasta, dried red lentil pasta and black rice noodles.

@PrawnSalad thank you! It’s so confusing! I think I will need to do gradually as otherwise will be so overwhelming!

Hello everyone, sorry I haven't been keeping up. Warm welcome to new folk. Hope this thread can help you in some small way!

I had the nerves burned in my back on Friday due to damage on the facet joints from pregnancy (joy). I've had a lot of pain and I'm on full dose gabapentin. Went for a 20 min walk today and my back was on fire. Feels dreadful. I'm so frustrated and feeling so sad. I just want to be healthy.

I also have an autistic little boy! Seems we all have lots in common

I'm hypermobile through lots of joints but on Beighton I think I'm a 6. I find the scale restrictive, my hip movement is extensive in external rotation but this isn't captured on Beighton scale. I also had significant spinal mobility before I damaged the facet joints, I could do very very deep back bends with minimal effort. I scar and bruise badly and take forever to heal. 2 years on my c section scar is still very purple.

Productive day here.
Cleaned the house.
Done the census.
Baked a cake.
Been for a walk in the sun.
Made a roast dinner.
I can't walk now of course, but I have got a lot done. Thank goodness for youngest child who is now doing the ironing.

Just burnt myself (again) filling up How water bottle. I know you can get head packs but not as hot for long. I’m keeping Superdrug in burns gel.

Have run out wine so no drinking tonight!

Hi can I join you? I have Kienbock's disease, which means my lunate bone in my wrist collapsed because of lack of blood supply. I had an operation last year to remove 3 wrist bones but I'm waiting to have further surgery as this didn't fully correct the problem (well, it kinda did but then it created a new problem).

I haven't had a very productive day today because my pain has been horrendous. I've spent the whole day with my arm under a hot water bottle. I did manage to get dressed, so I'm counting that as a win.

Hi @DuckWithOneWing you are very welcome. We can all relate to that sort of day. Feel free check in with highs and lows so you don’t feel as lonely.

Hi @DuckWithOneWing welcome And sorry to hear about your condition and pain you are in.
I had a pretty unproductive day- I am so wiped out at the moment. Not sure which of the conditions are causing it or it’s depression to be honest. Just have no motivation and exhaustion all the time.
Really need some normality as this is partly how I cope with the pain- distraction

Hi duck and I’ve probably missed lots of newbies sorry my brain is sooo not working!!!

I’ve finally got started on my PIP renewal. Had a sicky headache for a couple of hours too, it’s happening a lot lately.

This is such a depressing process, I hate it!

How did you get on Sky any progress is great.

Thanks :) mostly done the writing bit now. I’m really trying not to overthink it all - I have no way of knowing if what I wrote is going to be good enough, no way of knowing what my original form said because the old laptop died. So I really just have to do my best and hope for the best.

Tomorrow I’ll have to think about evidence but I can’t think of any as the only specialist I’ve seen is a psychiatrist for the adhd

@SingToTheSky what I did on PIP renewal form was just reiterate in every section 'no change' except when worse. And I did a 'typical day' diary to send in too, plus a separate list of each and every symptom and how it affects DD.

Morning all. It’s Monday morning The sun is out aways feels kind of promising start to the week. Then by time have got dressed totally drained and yuck. Wish I could flick switch of stop expecting it to be any better, you will only be disappointed.

Thanks so I will put some stuff in the additional notes bit. It’s so variable with me. I’d only get a few points in each category anyway but it all adds up.

I know what you mean about expectations akire I feel like I can never have more than one good day at a time. Maybe two very rarely. Either mentally or physically. And it’s not like I push myself on the good days either.

I’ve had a very slow morning, been putting off finishing the form, but I’ve now had lunch and I really need to get on with it. Getting anxious again.

Today I’ve managed take washing out of machine and put on dryer rack. Been in there 3 days and getting re-washed after each overnight as smells bad. With a firm I will get it out this time....still at least it will be clean now!