My mindset has been extremely negative and I’m in a perpetual pit of despair, hopeless and anxiety but I just want to to express how incredibly grateful I am for this support group and others I have found. The incredible wealth of knowledge, suggestions, and support is a ray of hope and light in my life and so many others who struggle with this condition. I pray that we all can get to that place of health and healing. I’m praying for each and everyone of you. Thank you :heart::pray:


It is overwhelming when you get this diagnosis, and realise how hard it can be to get treatment, but keep strong and keep hoping, it is possible to get relief ! We’re all behind you :hugs: :pray:


Thank you for your nice post @Sunflower50. You’re at the part of this journey that’s the most difficult - not knowing exactly what’s going on in your body but knowing something is terribly wrong. I am praying that Dr. Annino will be able to answer your questions, help better determine the cause(es) of your symptoms & feels he can perform the surgery that will bring you relief.



You have landed on the kindest, most supportive site on the internet (IMHO) ))). And this is truly the case where knowledge is power. You are on the right path @Sunflower50. :hugs: :pray:



I have been there before many times - still am occasionally. It feels so alone to have chronic phantom and excruciating pain and anxiety invariably follows.

As the years go by, even the greatest of optimists loses their ability to keep believing tomorrow will be a better day.

I regret that there are days where I realize if it wasn’t for my incredible family and the love I have for them, my interest in carrying on would be reduced. And yet, I just keep moving forward - trialing this or that in the hope of the forever cure that might not ever come.

Regardless, I agree with you completely - I feel beyond blessed to find this forum.

With all the love, support and prayers I can possibly muster.



Really nice post, @JPB!

1 Like

Thank you…I have been so depressed to the point of having some dark thoughts but I know my daughter needs me. It’s just so hard wanting to exist sometimes. Dealing with chronic Tinnitus, chronic pain and other issues… sometimes you question what the point in suffering is. I have my family and my faith but sometimes it’s still so isolating and overwhelming. The monumental task of getting to the right Drs who will listen and to possibly help you, seems out of reach.


You are not alone!!! Those thoughts have flowed through some of the most capable individuals during their moments of confusion surrounded with disparaging health outcomes.

I have to believe the future has answers - let’s both keep looking!!!


Hey Sunflower,
My name is Merl. I’m a member of the moderator support team here on the Ben’s Friends Network.
Dealing with chronic pain from a rare condition is more than a double whammy, it multiplies it all. Add to that a lack of understanding by others (including medicos) and we can be left floundering. I’m sorry to say it like this but your experiences with the Dr’s is rather more common than they’d like to admit. They like us to fit into their nice and tidy diagnostic boxes, but when we don’t fit or our symptoms are considered ‘atypical’, often they don’t have the answers. P.S. I don’t fit their boxes either.

I’ve been placed in a similar position. My situation is neurological. At my last specialist’s appointment he turns to me and says ‘You’re not a ‘normal’ case… …this is more complicated…’ I want plain old ‘Normal’. I want this all to be simple. I have a problem in accepting it all myself and it’s happening to me, I don’t know how others around me can comprehend it. I tell them ‘I just have a bit of a headache…’ but I have a man with a sledgehammer trying to bash his way through my forehead. I’ve tried to explain it all and often their eyes just glaze over, they have no clue what I’m trying to manage. I get some weird and ‘wonderful’ symptoms that even the medicos don’t understand or can’t explain. It can be VERY frustrating at times.

We know all of this because we live it too and who better to get advice/information from than people with personal, first hand knowledge from a lived experience. So, come talk to us.

Merl from the Modsupport Team


Thanks Merl, you always put things into words so well :hugs:


Thank you Mel… sometimes I feel like I’m trying to climb a mountain but I’ll never get to the top. I’ll always be climbing, exhausted and hurting and will never get to see that glorious view that was all worth it in the end. It’s a hard climb but I keep on going. I’m tired of the pain, the constant Tinnitus, the Dr appointments, the fear the depression and the knowledge that I may never get to that place of better health. I just want to feel normal. I’m been struggling to get to the place of acceptance but it’s a difficult task. I want to do the things I enjoy. My career has already been taken away I just want to plant my garden and flowers and spend time with my family. I have to keep that fighting mentality but I’m weary from the battles I have had to fight in my life. But I will keep fighting. It’s comforting knowing others are fighting still or those who have had come to a place of healing can be that guiding light. Thanks again and best wishes.:pray::heart:


Beautifully written, @Sunflower50!

Hey Sunflower
When I saw this yesterday I was NOT in a great “…place of acceptance…” I was having a bad day. My days don’t work to a cycle. I’ve often said “I have good days bad days and OMG days. I have to manage whatever today throws at me…” and my ‘Acceptance’ of it all is a on a sliding scale. So, it was better I left it until now to respond.

My career has also been taken from me by my health and that was a big part of my identity. I was the helper, I was the one people went to for assistance and now here I was needing help. WTH??? That was a complete reversal, and I didn’t want to accept that, so I fought against it. Silly really, I was only fighting myself. I had to accept it to move on. Don’t get me wrong, there are still times I push my limits, but there is always a cost, usually in agony. I have to weigh up the cost vs the task. There are times when it’s like I’m trying to juggle 10 bowling balls all at the same time. It’s only a matter of time before I get smacked in the head by at least one of them.

Don’t ever let anybody tell you pain/symptom management is easy. It ain’t easy at all.

Merl from the Modsupport Team