I would like to know how to try to deal with this horrible thing. I have suffered for over 3 years and thought the pain id grown to bare was bad but over the last few weeks it just seems to be getting worse :frowning: I hate letting people down and don’t know what else to do as I feel like my doctor thinks I’m being a nuicence.

I know how you feel. I've been trying to get a hold of my doc for some different meds. But your doc is supposed to be there for you. However, some aren't just like that. If they can't fix you they just ignore you. I am trying to deal with the meds I am on, but it's like trying to hold water in your hands.

Do you have some topical lidocaine? What meds are you on? Can you go up or add something to it. Sometimes a doc needs you to tell them what you'd like to try. My last neuro appt. I told her "I want surgery". Since I've only been on one med a surgeon wouldn't likely talk to me and my insurance wouldn't go for it yet either so I told her about the lidocaine topical gel and she gave me a prescription. I actually didn't think a surgeon would do it yet either as they like to try different drugs first.

Honestly, I don't know how to bare the pain. I know that I can't. but there comes a time when letting people down has to take a back seat and you just have to let that part go.

Why do you feel like you're letting people down?

I feel like I’m letting people down cos I have to cancel plans or cut plans short if I’m in a lot of pain. I’m trying to live my life with as much normality as possible but sometimes it’s just not possible and I’m embarrassed and find it hard admitting that I need to slow down, I’m currently taking lyrica which gives me good and bad days, mostly bad at the minute

I know about the canceling plans part. But if you can't do it, you need to care for yourself. I feel like I am undependable now. I missed Easter at my MIL because I just couldn't get up. Thankfully I have a great MIL and family and they know that plans can change anytime. The bad thing is I don't make many plans anymore. Pain stops for no one. I do tell people that I cannot guarantee that I'll be able to make it, so they don't depend on me.

I also worry that if I have a baby I won’t be a good mum because of this awful pain. I’m 26, married just over a year and want nothing more than to be the best mum I can be to any baby we are lucky to have

There are a lot of posts / blogs on here about how to cope in general and tools on how to help your family understand about TN and chronic illness. I would imagine your family is supportive and if they understand you won't be letting anyone down. If you have the right Doc, you won't be a nuicance to him either. Treating and helping patients should be why he went into medicine in the first place.

As far as having a family: You and your husband should consult with your Doc before making that decision. You should have a drug plan in place. If your meds are to be limited - I would do a test run to make sure you can handle that regime for nine months while pregnant. You don't want to do any harm to your baby. If your Doc figures having a child is not for you - perhaps adoption is an option. If not there are plenty of support groups to help with that decision.

If you can have a family, yes be prepared that there are things you will miss. The upside - your child will have a parent that fully appreciates every blessed moment of time that you do spend with them. The time you spend with them might be of the highest quality. Many parents take those moments for granted and while they are present, they aren't really 'there'.

Don't be overwhelmed by this. Cross each bridge as it comes and whether or not your decisions are positive or dissapointing - there are plenty of groups to support you and help you cope along the way.

There is a parenting group on here - I suggest reading some of their posts when you are making your decision of whether or not you think you can cope with TN and raising children.

Take Care and GL with your decisions


I might add - if your family doesn't take the time to understand TN, what you are going through and tough decisions ahead: they are the ones letting you down.

Just saw this post…
I wanted to comment on the feeling of letting people down…
I have struggled with this for many years, when I initially was dx with TN my children were young I had just started helping out a friend with his photography buisness and I was the president of my children’s school council. I babysat my neighbors kids after shool and coached my daughters soccer team.
It was a rude awakening when I was unable to meet my commitments!
Aside from the horrid pain and adjustment to the meds etc there was the emotional side of things.
I constantly felt like a failure , and absolutely felt like I was letting everyone down!

With time sometimes comes wisdom, and I can say that NOW I explain to friends and family that I can only let them know the day of an event IF I’ll be able to make it. My daughters teachers know at her highschool as well as at her singing school that I love volunteering BUT can’t commit until the last minute.
It’s hard, I still wish I could do more etc and I still have feelings of letting down people especially my husband and kids, BUT people now know my limitations and better understand my condition so it makes it a little easier. The biggest difference is I now know those things too and I try not to do too much when I’m well and I’m honest with myself and others.

((( hugs ))) be gentle with yourself, and you should NEVER feel a nuisance to anyone. Your pain management is most important !