Need advice for painful bladder syndrome. It's for my mom who was diagnosed 6 months ago. Anyone have issues with getting a flu shot?

[aften16]

Just worried about a flu shot causing a bladder flare.

[Alaine1 Administrator]

Hi,

I also suffer from painful bladder syndrome and get the flu vaccine as I’m an asthmatic and also on long term immunosuppressant medication. It’s never caused my symptoms to flare up but it’s a case of weighing up the pros and cons of having it especially if not considered a high risk of complications if she does get the flu. On the other hand she might find that if she does get the flu it will cause a flare up. It’s a very individual condition so although there are treatments that can help it’s also about trying to identify anything that will trigger flare ups. I hope this helps

[aften16 in reply to Alaine1]

Thanks! Shes very nervous to do/eat anything that will cause a flare up. But shes also 65 and high risk if she gets the flu. Out of curiosity how bad is a flare typically? Like pain wise? Is it horribly painful or more of an uncomfortable pain? I'm sure it's different for everyone but I'm just trying to understand it better.

My mom has become very consumed by it so much that she has lost nearly 20 pounds in 7 months. Shes down to 85 pounds. I am worried it's become an eating disorder. Shes literally afraid to eat. She also has ibs and diverticulitis. She says the food she can eat for painful bladder she can't eat for her bowel issues and the foods she can eat for th ibs she can't eat due to her bladder pain. Shes on a very strict diet and often obsesses about what she can and cannot eat. I'm just wondering is it justified for her to feel this way? Are the flares debilitating and something to be this afraid of? Im trying to wrap my head around it all and be empathetic but my mom is literally withering away and has become a very different person since the diagnosis. Any advice or info you have to help me understand would be great! Thank you!

[Alaine1 Administrator in reply to aften16]

Hi,

Flares are very individual. For me I had constant none stop severe pain but I did have flare ups on top. Others get flare ups which are not too bad but still cause pain for the sufferer. I do think your mum would benefit seeing a specialist to discuss treatment options and perhaps seeing a clinical psychologist who could help work out ways of coping with flare ups. Clinical psychologists often work with chronic health conditions but most people think it’s only psychiatric conditions they work with.

It does sound as though your mum should see a dietitian to get her diet sorted. For me the food made no difference to my IC pain or symptoms but did have an affect on my adenomyosis and endometriosis. I saw a dietitian privately (UK) as the pain from all these conditions had caused me to lose weight which I couldn’t afford to lose plus I find it difficult to gain weight. It was a big help for me especially as I was given advice on what to do if I couldn’t eat due to nausea and vomiting.

I hope this helps

[kalecolbe12 in reply to Alaine1]

Forgot to mention that some people get BOTOX in the bladder which helps a lot of people

[kalecolbe12 in reply to aften16]

I completely understand because I had painful bladder syndrome 8 years ago and I couldn't eat anything acidic or drink anything acidic so what I did was I ordered body rescue pH drops from Swanson vitamins and they would make all my drinks alkaline I could even have coffee but the coffee I chose to drink was teechino vanilla nut herbal coffee which didn't have any acid in it...it's delicious with creamer in it . And if she can order some prelief online which takes the acid out of foods you should be able to get 360 for about $12 and you take two with any acidic food you might eat... I am also 65 and I have IBS too and pelvic floor dysfunction so I lost 20 pounds when I first got diagnosed too I was scared to eat because bowel movements would make the pain worse anyway I've now calmed down about it 10 months later...gotten my head wrapped around it and started a local chronic pain group with another woman. I am on cyclobenzaprine which is based as a tricyclic muscle relaxer and I also have gabapentin for nerve pain in case I need it... ... I agree with Alaine that having some councelling may help...which I may do at some point also.I can't explain how debilitating it is .. so very painful and regular pain meds don't really help you have to have a tricyclic antidepressant like amitriptyline or gabapentin ,cymbalta or cyclobenzaprine to stop the pain signals to the brain,otherwise it takes a hold and it's hard to o control... You can message me any time.... Oh and youmy also want to have your mom join the interstitial cystitis association for support.one last thing.. I found that vesacare or oxybutynin helped and also at her age which is the same as mine she may benefit from some of the bioidentical hormonal genital cream

[aften16 in reply to kalecolbe12]

Thank you so much! I will pass this along to my mom.

[kalecolbe12 in reply to aften16]

you're welcome and one more thing I thought of I've been taking 10 billion probiotics which is the least you can get 10 to 50 billion hand I just got mine from Walmart the spring valley brand... They really hope that IBS and I'm gluten and dairy free you can get delicious dairy-free ice creams ,cheese and other dairy products...and I don't know where you live but you can get gluten-free at most grocery stores now and there are gluten-free bakeries everywhere