Hi yes I saw my surgeon and he just said it was one of those things that happen during sugery and I was unlucky but nothing else. I live on my own and don't have family except my two budgies who are great, I do feel depressed and can't get motivated to do anything, I guess I am afraid and unsure of what will happen next with my body. I seem to have a lot of symptoms common with people here but others aren't so common so I wonder if there is something else going on ! I will see my doctor next week and insist that he does something to help, if necessary I will stage a sit in ! Thank you all again and hope you are having a good day:cool:

In need of advice for travelling
 

In need of advice please, I had a mastectomy which went wrong and now have PN, part of my condition is worrying me, when I go for walks I suffer for the next 2 days and cannot do anything. I feel pressure on my throat and back of neck and the pain in my back is much worse. I am travelling home to Ireland on 13 June for 2 weeks with my Mum and I know that with the luggage and the long walk in both airports that I am going to be out of commission for 2 days afterwards. Does anybody have any tips or advice on how I can reduce the impact of this ? or indeed are these symptoms normal for PN sufferers? Does anybody else have them? Very worried and praying for replies.

I wonder if a little physicial therapy would also be appropriate.

judi

Hello angel
 

I am glad you found this forum too. I have been here for two years, and don't plan on going anywhere. I am sorry to hear that you have such medical trauma, and that your doctor said goodbye. Personally that is terrible to do to a patient, and you deserve better treatment than that. Please seek another pain specialist, or a PCP who has compassion, and can direct you to some better help. It does exist. Also consider a pain specialist in conjunction witha Physiatrist. This kind of doctor treats the whole person, not just your pain. They have a mind, body, kind of connection that they adhere to. This will help with your mental state in dealing with your health issues. There are also alot of medicatons to help you. Do find ones that work for you, and that can ease your pain and discomfort. Nobody wants to live a life where the quality just isn't there. I hear your pain, and I do know there is help for it. I too am a pain patient, and have received good help for a number of years now. I have PN, but in specific locations, like in my foot after some surgeries that did nothing but give me the PN. I have joint problems. You are not alone, we will be here for you, and I will try to stay in touch with you as you go forward. Try to get the help, and when you do, you will feel like there is a little more help for a life that has meaning. I am here to talk to. I also run back here for my own issues, and get the compassion I need to go forward in my own life. None of it is easy, but this site has helped. I will keep you in my thoughts and prayers. ginnie

Help needed on travelling
 

It was lovely to read your reply ginnie, thank you. However I do feel alone as I don't know if these symptoms are part of PN or not. The throat constriction, the upper and lower back pain and other symptoms are not mentioned by sufferers of this dreadful disease. I am worried about travelling and problems I will have when I arrive, I just don't know what to do anymore. I can't even walk without suffering for 2 days, I am not feeling sorry for myself but I am looking for ways to improve my life and help on travelling. Can you advise me on these please right now i just don't want to be here I am so fed up and just lost.

How about asking to have a wheel chair and or a cart that many airports have which can move you and your luggage to the gate you need to be at. And they can make arrangements at the next airport to meet you with the same type of equipment you might need. I've done it and it worked great. JMO

Hi angel
 

Hi, and sure I am here. You are not alone. NT does not abandon anyone here, and somehow we all wind up in a better position. If you are having trouble with your throat. I would address that first with an upper GI doctor. This can be part of PN or a number of other issues. It can be serious, and compromise eating, swallowing or even breathing. Throat issues should be checked out, and therefor when you do it will reslove some of your worry. A good GI man usually is a good field of doctors, and most of the time very compssionate. I have had a number of swallow tests, and endoscopies myself. Nothing to worry about, easy tests to get through. PN is weird. I have it in my foot, traveling up my left leg. There are so many different causes, that a good neurologist is important too. You need to get this all looked at, and then think about travel. If your life is being compromised because of your medical conditions, go check them out so you can get back to travel. Put your priorities into your health first. don't think about travel just now, as in the course of things that is not what is important. Your health is important, more than your wish for travel. Do you kind of understand that?. If you are feeling ill for days after doing something, this is the time to really get to the bottom of what is wrong, and address it so you can go on with what and how you want to live your life. Tell the site where you live if you care too, somebody may be able to recommend some doctors in your area. If I were in your shoes, I would actively get the help, try to get some resolution, so you have the ability to do all the things you still want to do. Put the travel up on the back burner and go see some good help. This site will be here for you and so will I. It isn't fun to have medical problems, but they can be made to be in the back ground, not an all comsuming problem that takes away your quality of life. Take care, write any time, I will try to answer you. ginnie

post pone travel?
 

Can you post pone the travel, until some of the issues are resolved? or do you have to go because of family etc? Can you address these issues once your arrive at your destination? ginnie

I have to go as my Mum is very poorly and needs me, I am so scared of something going wrong before I see her or have her see me in pain, it would really upset her. I do understand what you are saying and appreciate the fact that now my health should come first. I've always shrugged off any health issues I had in the past and never had time for me, put my family first etc. I am divorced and live on my own now and my family are all over the place so I don't have the support or backup I need when going to see my Dr who is really a great guy but doesn't know anything about PN. I will make an apmt to see him when I come back on 27th June and write things down so I remember. Thats a great idea about getting help at the airport I shall email the airline now and see what they can do, I feel like a fraud though do I really need a cart or wheelchair? others are so in need of them and people can't see whats wrong with me, its not visible per se is it? Have you flown and if so how did you feel on arrival?

I have a wheelchair and scooter for my POTS. Even 15 year old girls with POTS use them. You cannot see what is wrong if you have most problems in need of a w.chair. Just do whatever helps you.

I use them in large stores because the blood does not stay in my head and heart. I can walk fine in restaurants, small stores now. My husband and I can do fun things and get a lot of errands done easily with my scooter etc.

They are just tools to help us. Just because you have no broken leg to show people doesn't mean it will not help. I never wonder why people are in a w.chair. I always just hope they feel ok. Most people don't care why we use them.