Lived Experience Forum

[Eden1919]

@Doglover  I am glad you found it helpful. as for the autoimmune or nervous system stuff i ask because my mother has many of these issues and she often gets burning and stinging feelings amoung other things. if the burning feeling is inside vs on your skin it could also be to do with your temperature regulation. but if i was you i would be getting an evaluation pyhiscally about it as it may not be caused by mental health it could be but better safe than sorry i guess is my view. never pain is often described as a burning feeling and can be from a pinched nerve or from another condition. just a word of warning about investigating this further as far as the physical side lots of doctors dont bother to do further testing because many of these things a rare and so they dont think of them but they also dont often show up in usual tests. and i am not saying do the tests without reason but if you have been on psych meds and they arent helping this issue then perhaps it is not mental health related. but you have to be a strong advocate fro yourself because lots of doctors can dissmiss your concerns because they dont think it is a common problem. my mother for example was told she was depressed and that is why she lacked energy but it turned out to be physical and upon further testing reveiled a wide range of issues. i am also not trying to alarm you but i just think it seems to be really bothering you and you deserve to find something to help and you might not find that helpful thing if you are looking in the wrong places. so it may be best to look everywhere. i am not sure if i answered your question or not but if not let me know i am will try again.  

[Doglover]

Hi @Eden1919 , thanks heaps for your reply. Yes there are certain symptoms that are not being helped my meds and i believe its because the cause is physiological not mental. 

I have a long history of these burning sensations in head and body and it has always hapnd after my many iron infusions, along with extreme anxiety, insomnia and other horrible symptoms, but nobody believes it cld b related to the iron infusions. I also hav a long history of having a milder version of the same thing when i consume certain foods - sodium/salts, spices to name a few. Once again, no one believes me and as far as i know thr r no tests available for it. I hav had these reactions so many times. That is how my 'MI' issues started. I had an iron infusion after my pdoc convinced me thr was no possible way it cld cause the reaction i always had to them, that it was all in my mind. That was October last year and i havnt bn the same since. I got all the normal symptoms i get with the iron infusion - extreme anxiety, insomnia, burning sensations plus lots more. Normally i wld ride it out and it wld subside after a week or so but was utter torture, this time it didnt subside after that time and was so torturous i cldnt stand it nemore so sought medical help. Was diagnosed with an anxiety disorder (all the medicos categorically denied that it cld hav nething to do with the iron infusion) and here i am now 7 months down the track and while the meds hav helped with some of the symptoms, 2 of the 3 meds im on i hav to get off coz thr short term use only and iv b on them for 7 months, but none of the meds they hav tried for anxiety long term hav agreed with me - and nothing gets rid of the burning sensation - except the sleep med which does enough to make me sleep (most of the time) but the moment i wake up the other symptoms ar there. Its just crap! Hence why i hav my concerns that im not going to get better, and not going to b able to get off the meds i need to get off, cause i think thrs ingredients in them (like salts) that r perpetuating the problem. Does that sound crazy? It does to the medicos, i know that much! They just think its all in my head and all part of my MI!

[Ali11]

Hey @Doglover,

Thought I would also reply here to say it is good to see you pop back in and share an update on how you are doing. That's the good thing about these forums – the knowledge and freedom that someone will always be here to listen.

In the time when you are not using the forums, do you have someone near you, like a close friend or relative, that you share your concerns with? Remember to forgive yourself, you are doing the best you can with what you have

[Doglover]

Hi @Ali11 ,

Thanks so much for ur support. Yes it means a lot to know that someone is always here to support u. I think we wld all like to b able to take each orhers struggles and pain away - if only we cld do that too!

My support network is a bit of a mixed bag. I am able to share some with my mum who understands as she has MI, however she is not all that well physically so only has so much to giv. I hav an elderly friend who is very compassionate. The hardest part is that my husband, who i love very much and who loves me dearly, is not very supportive, does not understand MI, and doesnt rly try. The lines of communication with him concerning my struggles and all that im going thru are pretty much closed. And that breaks my heart. Tried talking to him tonight but its all very matter of fact, when what i rly need is some tenderness and compassion. Not his strong points in general, and way more so when it comes to MI! Often when i try to talk to him it ends up with him getting annoyed/frustrated/angry, or at the very least, tetchy. Its a situation i struggle with inmensely.

[Doglover]

Oh @Ali11 , and thank u re forgiving myself, i needed to hear that! I realised today in group that i am so hard on myself, that i wld never say the things to someone else that i say to myself. I am so harsh, self critical and self blaming. I blame myself for  how stuffed our lives are now, the shell of a marriage and life we now have, i take on that guilt and responsibility and somehow i need to learn to let that go! So thank you for reminding me!

[Lauz]

Hi @Doglover & @Eden1919 - this thread should now appear for you both and anyone else that comes through in the forums area. Thank you for your patience and for working through things with moderators on email. ⭐️

[Eden1919]

@Doglover  That is very frustrating sadly medicine as far as it has come does no know everything yet and as such those who potentially have rare disorders or reactions to things will likely not have the right tests avaliable to them or the right treatments. it is hard and not fair at all but sometimes you just have to live with it until new tests become avaliable. if you can find a way to make it tollerable then perhaps that is the best start. dont stop advocating for yourself though and a good point was made about not blaming yourself. there are many things we do and dont know in this world and it is sad that i think many people assume we know most things as it means they stop looking for more informantion. and you are not alone either there are many medical mystery people out there who are having trouble but dont have answers. do you know of any things that do help reduce this burning feeling? also perhaps consider looking into an occupations therapist and see if you can use some sensory things even just to confuse your body. but idk if that would be helpful or not..... 

[Ali11]

It's great that you're aware of that negative self talk @Doglover, with awareness we can start practicing on silencing or changing the story and giving ourselves the love we deserve  

[Doglover]

Hi @Eden1919 , yes it is rather frustrating, especially when no one believes u, even those closest to u. 

You r right, thr are no tests available to test what i believe the problem is (reactions to certain foods and substances) and it means every day when i take medication, i am potentially taking in substances that r perpetuating the condition (i believe that to b the case due to past experiences). My doctor categorically refused to believe that i cld get the reaction i did from the iron infusion, hence i had another one, hence iv ended up in the position that i am now. The way i look at it, there is not a single medical professional, or even all of them combined, on the face of this planet that knows everything thr is to know about the human body! 

The only thing that stops or reduces the symptoms is to not hav the things that cause them, which i cant do bcoz of the medications. In my general eating habits i avoid the things i think r a problem.

How r u doing neway @Eden1919 ? You were doing it pretty tough the other day, has anything inproved for u?

[Doglover]

Thanks for your encouragement @Ali11 . Yes i hav bcome aware of late just how bad my negative self talk is, or maybe its got worse. I think the latter is the case bcoz i blame myself for all the ways that me, my life, my marriage etc has changed for the worse due to my MI. It brings me very low at times. But you're right. Now that iv recognised it i need to start changing it - thats the hard part! Im not sure i hav the skills to do that! But il try! I did get some info ystrday from my OT about negative self talk and how to challenge it, so thats probably a gd place to start!

Thanks again @Ali11  for your support.

How r u travelling?