Where's the Love?

I need some friends who understand what I am going through. Not looking for a pity party but I struggle that a few friends have recently written me off. They don't understand how sick I am. Or they miss the old me and don't enjoy the new me. People constantly tell me how great I look. That probably shouldn't bother me yet it does. There is this struggle from everyone to come to terms with how disruptive my condition is.

I do have some understanding people in my life but I feel like I have been left behind by others. My struggle has been life long but as my migraines were silent always thought it was possibly MS or severe fatigue and wrote it off. Never pushed my doctor or could accurately explain my weird symptoms. It's mostly neurological including dizziness, limb numbness, brain fog and nausea. It is constant at its baseline and activity of any sort increases the symptoms to where I shut down. Resting helps but overnight sleep seems to hurt. Mornings and nights are bad but if I am active in the day I have bad migraines during the day. There is a bit of head fullness but the headaches are background and can live with but the brain fog, disorientation along with dropping things all the time are the toughest to deal with. My triggers are many including car, TV, sounds and smell, foods. Have tried botox and several medications all for naught and am about to try acupuncture. The anxiety of feeling like I have no control over my body makes it worse. Things are hard.

On the plus side my family vacation last week was great despite struggling mightily for big stretches of time due to hot, humid weather along with the travel. Had been worried that my health would ruin the trip but we all had fun and relaxed and created some moments so I am celebrating that. Reminded me that there is opportunities for pleasure in this world.

12 Replies

  • Hey kmp1960 😘 yeah i feel your pain. It's aweful when you have an invisible disability that very few people understand.

    Sending hugs 😆

  • Cally01, thanks for the love.

  • Hi. I have symptoms very similar linked to an auto immune disorder. Wonder if you have had that ruled out. I know the suffering involved. I am currently diagnosed and symptom free thank goodness. X

  • I have had MRI on brain and an epilepsy test but don't think any specific testing for autoimmune. I did notice that may on here have other symptoms that I never attributed to the silent migraines including joint pain and prostatitis. I will explore this. Thanks for your reply.

  • Yes my mri etc always clear. Blood tests likewise clear. I started to have seizure with mine about 3 or so years ago. That is when my medication was stepped up and I am now blessedly symptom free. I hope for a similar result for you.

    Please remember auto immune diseases are so hard to have diagnosed. But if it is that and you can get a diagnosis it will change your life as it did mine. Please don't give up. There are answers out there. We just need to ask the right questions of the right people. X

  • Magirose,

    How did you go about getting diagnosed? Was considering seeing a rheumatoid doc about autoimmune issues including joint pain flare ups. The Autoimmune diet protocol has so many "trigger foods" for me so starting on that might not be the way to for me as there would not be much left to eat. Any thoughts?

  • Hi. Let me just say I do not follow any kind of special diet avoiding 'trigger'foods. Since my disease has been well under control for three years I get zero migraine and almost zero headache of any kind. The illness was 100pc the trigger for my pain. There are no foods which affect me. It was the cycle of the illness itself.

    I went initially to see a rheumatologist about joint pain. She identified that I didn't have ra but had arthralgia and she suspected an inflammatory process going on. She referred me to an oral immunologist who hit on the fact I have Behcet's.

    I asked for a referral to an immunologist on advice of the Behcet's syndrome society in the uk. It then took a year for diagnosis.

    I don't know if you are in the States or UK but my approach would be the same. Speak yo vasculitis UK here or to the American vasculitis foundation and ask for a good doctor in your area who deals with vasculitis.

    This illness is so poorly understood if you go to the wrong doctor you won't get very far.

    Along the way I have seen a different rheumatologist and a neurologist who were not any use to me. I have only had the treatment and understanding of the disease since I have seen a doctor who specifically deals with vasculitis or was an immunologist.

  • I will pursue this avenue. For me, there are trigger foods but perhaps the perpetual nature of my migraines have this underlying cause.

    Many thanks!

  • Just wanted to clarify what I said about foods and triggers. So over the years before diagnosis, I was diagnosed with IBS and obviously also had dreadful migraine.

    Because the disease was causing these symptoms anyway, it is probably true to say that certain things would aggravate the underlying symptoms. Alcohol was a particular trigger for migraine for example. Certain foods would aggravate my tummy. Now that I have treatment, I don't notice anything triggering symptoms. I have no symptoms now. But I do watch what I eat and would say that instead of triggers I have noticed certain foods have a good impact on health for me. Natural anti inflammatories like avacado are great. So is fish. Fresh salmon is brilliant. And I recommend anyone with these health problems to be food conscious and eat well. As with any disease, a good diet can only be beneficial. Exercise too if you can. I would caution anyone with autp immune disease against raw garlic and echinecea. Your immu e system is already over stimulated. These are not beneficial in my opinion. Xx

  • Good to know. Thanks for offering me a new avenue to explore with doctors that are in synch in my quest for better health.

  • Know it might not help but am sending a big hug and letting you know some of us out here understand all to well what you are going through , wish you well xx gina

  • Ginanne,

    Thanks. Big hug right back at you.