We want to better understand your symptoms - and specifically which ones you feel you would like to improve first.
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If you could choose which symptoms you struggle with the most to improve first, what would they be, and why?
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Thank you for taking the time to share your experience
- Anna
After being hospitalized for meningoencephalitis in fall 2020, my brother asked me one day that winter which problem (of numerous) I would pick to endure for the rest of my life, given the choice: catheter, wheelchair, partial blindness, or chronic pain. Only four options at the time, although I had dozens of health issues. I picked pain and got it. The other three have gotten a lot better overall in the past 2.5 years, but the pain remains.
But pain is not what I would choose to improve, if I could. It would be nice to have a day without pain, but it's not the main reason I cannot live a full life. I also have severe movement disorders (e.g., ataxia, myoclonus) and an exaggerated startle response (acquired hyperekplexia) from the brainstem damage. Imagine involuntarily and dramatically reacting to every dish clanging, every hair or tear tickling your face, every dog barking, every car revving, every lightning strike. I can barely leave my house because a startle attack will likely put me on the ground in convulsions and prevent me from walking properly or safely for hours or days.
Acquired hyperekplexia is not a seizure-based disorder, as far as EEG can tell us, nor is it a psychosomatic issue. My brainstem was inflamed for several months and is likely structurally and functionally damaged; only an autopsy can show us the extent of the damage. My brain is afraid of the big, bad, loud world, and there's very little I can do about it. Yes, I wear earplugs and sunglasses, use mobility aids, and try to avoid stimuli and surprises. But that means I can't go to restaurants or concerts or really any other public place. I can't hold my nephew safely. I can't socialize or relate to others because very few individuals want to sit quietly in a house all day.
The best option doctors can offer is sedating myself with benzodiazepines. I know what it's like to lose my mind and sense of self during the acute illness. Why would I voluntarily return to the dystonia and catatonia?
Anyway, not sure who would read this, but, if you got this far, I hope you learned something about the crazy things our brains and bodies do, and how they can sometimes unwittingly betray us.
Sincerely,
Kit
THank you, kitnkaboodle, for so openly sharing your experiences, I hope that by sharing your story you can feel more empowered over your health.
Hi, the part of my PCD that causes most difficulty is bronchiectasis, closely followed by hearing issues. I hate I was born with PCD. It has caused issues from early life, at school I wasn’t allowed to do swimming as was thought too risky. When knew heart on wrong side always carried note about it. Wasn’t properly diagnosed until I was 32, after having two daughters. Jean x
I am so glad to hear that you finally got a diagnosis after so many years. How did that change your feelings toward your health?
I would choose to have the all over body pain taken away. Plus no fatigue would be lovely.
I agree. The energy to actually do something would be fantastic, a dream.
Hi, I would get rid of dizziness first in order to move about and improve exercise, which in turn helps repair the brain. Then, I work on visual using eye movement exercises. Then trying to get a decent sleep, which in turn helps heal the brain and mentally. Then I would work on pain, but hard to know if something broken due to NHS Dr not helping over 2 years later. Change diet and eat blueberries and other brain food. Stay off screens and to book puzzles to use the brain. Everybody then just needs that final bit of support to say you are okay keep going. Thanks
Thank you for sharing, Letsrock. Have you found anything that helps the dizziness, or enough so to do some light movement?
I would give ANYTHING just to get rid of the BLUR in my right eye. I could then ditch these glasses as I do not need them all the time and just went to the opticians for something slightly stronger for reading and now I am saddled with Glaucoma
Thank you for taking the time to respond about your Glaucoma.
Hi Anna, Thank you for this question. The symptom I'll choose to improve first is body tingling and restless legs. These symptoms make it difficult for me to sit still like others and concentrate. It makes my body feel detached from me. I've been dreaming on the day I can feel my body, sit still and concentrate like other people I see. It makes my body not to be relaxed and I want it to stop.
Thank you
Hello Anna , if I could get rid of one thing or improve it I think I would prefer more mobility /flexibility of my limbs . I have multi joint arthritis, COPD and other minor issues.
Thank you for responding, katieoxo60!
If I could get rid of any symptom it would be pain. I have Psoriatic Arthritis. The flares can be crippling. And because of the PsA, I have end stage renal disease and diabetes. If I could go back, it would have been to not have taken ibuprofen for the pain for so many years because no one would test me for PsA until my hands started to curl up. I would not be in the condition I am right now. And the pain is still there, even with monthly infusions.
Thank you for sharing your experience Bassetmommer, sharing your story will be of great help to those who are at an early stage.
Hi Anna, thanks for asking the question. Having hypothyroidism and being peri-menopausal I suffer constant fatigue. It affects all aspects of my life and I have to plan accordingly to ensure that I have enough energy. I now can only work one day a week and that has affected my standard of living. Sadly the NHS does not deal with hypothyroidism unless all you need is levothyroxine. I have to source my medication, blood tests and consultant privately, which is not cheap just to add to my money worries. I also care for my elderly mother and I think she has much more energy than me! Just to have enough energy to do the housework properly would make me a lot happier. 😀
Hi, I know what you mean about NHS as I started to go privately now. With regards to your fatigue, are you taking anything like menopause tablets? They really got rid of my fatigue instantly. Try morrisons menopause as they are half the price of others. One step to take care of one thing. Xx
Thanks for your reply Letsrock. I am currently on HRT but will look into your suggestion for supplements, although I’m already on biotin, multiguard adr and fish oil so I will probably rattle 😀
Fatigue is what affects me most and ironically, the drug that keeps my heart in order comes with added fatigue and messes up my digestion which runs fatigue pretty close!
Hi Vonnegut, thank you for sharing the symptom that you struggle with the most.
And just heard an explanation of why I have fatigue and AF, which confirmed my suspicions - “ In our Time” on radio 4. The bout of shingles I had when I had the pain before the rash and couldn’t get an appointment for an antiviral must have damaged the mitochondria in my cells and the rest followed!! Never needed anything for menopause as guess my diet meant I hardly had any nasty symptoms during that - but that was 25 years ago now!!
oh yes, I forgot about the brain fog! LOL
Hi
It is observious with my sypmtoms..
Having to stop walking or doing what I am doing. Also whilst
bending over I have to stop.
But my H/Rate is controlled with CCB Diitiazem 120mg and my BP is controlled by BB Bisoprolol 2.5. These are separated CCB AM and BB PM.
Thanx JOY. 74. (NZ)
After thyroid cancer causing the AF and removed I keep my TSH 1.0-2.0 T3 4.0.
I'd chose to have my leg muscles working again so I could walk.
Brain fog because it makes me feel stupid, and bloating. So uncomfortable. Dizziness comes in very close. Pain I just accept
I would have to say the fatigue. If I had energy, I might be able to find a way to control, or improve, my pain through movement. Who knows, my medication doesn't work anymore. To not have to schedule a day to take a bath. A day! To not have to cancel appointments because I'm afraid to drive due to exhaustion. To not hide in my house because I cannot leave without making sure I can get back. To not spend 70% of most days in bed. What a dream that would be...but, you put your big girl panties on and do the best you can as I am primary carer for my daughter, and secondary for my niece. Self care is what happens if I have the energy after caring for them. Fatigue is a silent, invisible, debilitating, frustrating, symptom.
Thank you, Queenie1970, for writing so openly about your fatigue. You sound like you are a courageous woman being a carer for both your daughter and your niece. I hope that between the chaos you can find moments of peace and quiet to recuperate.
oh dear. Yes I free with a lot of what you say - plan a day to wash my hair! Not that it takes all day but the drying and straightening take energy and can’t be done just before going out that’s for sure. We’ve done away with the bath as I can’t get back out on my own. I’d forgotten to put in my reply about when driving making sure I’d enough energy to get home again too. Rest alone you’re not on your own. Xxx
agree
I would choose to have joint pain taken away
The constant pain and fatigue.
Fatigue is my worst problem which is also a side effect of the Flecainide which keeps my heart in order (mostly) and messed up digestive system which might be a side effect of prescribed drugs too as never had problems prior to all this!
Living on my own for twenty years, its the one that's ALWAYS in the background, grin and bear it, maybe will feel better tomorrow, a good break I will feel sharper, but its like a black cloud slowly but surely, the older I get, those clouds get nearer DEMENTIA!💀
it would have to be pain and then fatigue. There doesn’t seem to have been any new pain meds developed for years and most only serve to sedate people and have bad side effects. Pain specialists vary but some can be wonderful. Mine has helped a lot but I am on a waiting list of over a year to see him again. I think this is a service that could really be expanded. Being in constant pain is so depressing and tiring.
energy - because I can’t do two things in a day or one day after the other. Very debilitating - for me and my husband. Also after you have done something one day there is a knock on effect the next, or for a few days after depending on what you have done. If you know you have a big day coming up you have to ensure you rest well before hand.
My CFS is in first place with chronic migraines.. Both cause debilitating fatigue and pain and stop me having a life. These have been going on for years.Second place Is the chronic pain in my back due to a combination of nerve damage and osteoarthritis.
3rd is the osteoarthritis throughout the rest of my body.
Unfortunately what I need to do to help one thing tends to impact negatively on the others. I'm still working on the balancing act.
If I could stop the fatigue this would I'm sure help lessen the number of migraines which in turn would help lessen the fatigue
I would choose to improve the pain first, it’s debilitating and excruciating some days. If I could wake up pain free and jump out of bed in the morning that would be wonderful.
Chronic pain after the surgery
Digestive symptoms are my nightmare. Is there any scientific evidence suggesting a link between MPNs & the associated medicines & digestive disorders? No one has ever suggested to me that there might be a link!
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