To those that suffer from abnormal sensation, what helps to relieve the sensations? What have you tried? What has helped or worsened your symptoms?
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You're welcome. I have Central Sensitization Syndrome (CSS) with underlying conditions of chronic back pain, migraine, small fiber neuropathy and heightened sensory sensitivities. I manage better since going to Mayo PRC almost 2 years ago. Symptoms remain a daily challenge because they're a permanent part of me now but one that I'm better equipped to handle.
PRC offers cognitive behavioral therapy to help deal with loss, grief and much more that's incorporated into living in chronic pain. They also focus on reducing or discontinuing unnecessary meds, which in some case can have an adverse effect on CSS. Learning through therapy helped bring the reality together that chronic conditions aren't going anywhere and how best to work at finding acceptance and strategies for life quality despite them. And of course a big part of management is physical therapy. Motion is lotion as they say in rehab, and finding the proper way to move our bodies and stay active actually helps us more than hurts us. It's about moderation and modification of activities.
How have you been handling loss and coming to terms with your condition? It's a tall order to fill, but can be done with work. Do you speak with a therapist?
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I find it strange that we are suffering against the plenty who don't and find it hard to understand why? I do speak to the Samaritans but not a therapist per se. You certainly do have a lot to deal with and I thought I was bad enough. It's hard when you have been quite glamorous and suddenly find that is no longer the case there isn't enough room to be even slightly vain. I always took pride in my appearance but I no longer really care because of the pain and duscomfort. Acceptance I haven't reached yet because I hope they may cure it.
Not sure if you got my reply previous to this so I will write again. No I d=
on't see a therapist but do contact the Samaritans when I get very anxious=
=2E You certainly have a lot to contend with and I thought I was bad enough=
=2E I find it hard to accept to the many who don't have these conditions. I=
just hope that they can cure me in some way that's what I am hoping anyway=
=2E It's hard when you have been quite glamorous which I am not now as ther=
e is no room for vanity with these conditions. I wish I could be like you a=
nd accept but it's still early days for me.=C2=A0
@fisbo I did receive your first reply. It seems some of your posts are coming through a bit odd. Can you see how they look? What device are you using? A smart phone, a lap top?
Sorry that I'm not too familiar with what
" =C2=A0" means or why "=2E" is appearing before each new sentence.
@fisbo Oh, my dear, my dear… I do understand your comment about not caring to be glamorous any more because of pain. Ugh, pain drains us, but….only if we allow it to. Surely there are better minutes, hours or days than others and it's those small wins that have to be our motivation. Can you think of a small win that you may have had recently?
I began becoming disabled around age 43 and by 46 I was on temporary disability from my 26 year banking career. I've always taken pride in my appearance (just like you), since I was a teenager and studied cosmetology. It was a hobby and brought me joy. Once I was no longer able to work, I thought, why, why would I continue to put on make-up, jewelry and style my hair daily when I sat home by myself in pain? WRONG answer.
I knew better, and even though I succumbed to that mentality once in a while whether it be physically or mentally, I reminded myself that looking in the mirror every day and seeing what I liked helped my self esteem, and we all know that self-esteem takes a hit when dealing with chronic symptoms. That was my start, my goal each day…get out of bed, get dressed, maybe not be AS glamorous, but dang it all, keep fighting to care about myself!
I admire that you have hope. Keeping hope alive for a cure is awesome, but in the mean time waiting for a cure may mean what beautiful life you have in front of you may be wasting away. Fisbo, what do you think might be one small step in the right direction for you to feel better physically, emotionally or behaviorally? Might it be setting a small goal like putting on a piece of jewelry each day? Might it be wearing a little lipstick? What do you think might help you feel a little better about yourself?
I have no idea but I did notice it myself I think it must be to do with the site not my smart phone. Not to worry ignore those numbers. More importantly did you understand the messages. I hope I don't come across as being too self absorbed. I certainly am not but wish I didn't get so panicky as I am at the moment.
Just being normal would be helpful. My nerves are bad unfortunately I do suffer with chronic anxiety so it has a lot to do with not being able to cope and I worry about my partner who suffers with emphysema – an obvious concern.
I understand completely. My husband is 18 years older and at 76 needs be more, and my PN wasn’t in the plan. I was instantly disabled from working at age 52. I used Covid isolation and cancer treatment & recovery as grooming & vanity excuses. Then I started noticing myself more in the mirror, and cringed when I saw pictures of me posted by friends on social media. It made me circle back to my concern for my husband and helping care for him. If not for myself (which is most important), can’t I try to make him feel better by looking better myself? I started by swapping t-shirts with better fitting non t-shirts. In the past few months I started back with eye makeup – just shadow and mascara. It’s a challenge not to poke my eyes out since neuropathy rules my hands too, but I had forgotten how it accentuates my beautiful blue eyes! Now, I failed at putting on earrings, but that’s ok, I don’t need them. I just can’t tell you how much better I feel about myself just after changing shirts and livening up my eyes. I hope to hear you can get an ego boost too. Hugs!!!!
Thank you for your responses. Looking at you is like looking at me my partner is 17 years my senior. I am 65 with PN in my feet and lower legs. It is difficult to be vain in this state. I fully understand where you come from in what you say. I was very taken up with my appearance but no longer feel the need. I care for my partner deeply and worry for his health as well as my own. It's a tall order to have this mess I feel we are in. Despite that we have to move as much as we can even if it's little steps. I did a like if ironing yesterday and felt goid. This morning I was very anxious and shaky because when I start to think I shudder to think about what the future actually holds……
There are great mentors here that I’ve learned a lot from to help with positive thinking. Not to exclude anyone, but @artscaping and Rachel have some non-pill therapies and exercises to help cope. Bottom line is we can’t help our partners if we don’t do our best to help ourselves as much as we can. Send me a message any time you want to chat. I’m not always fast responding, but I try.
I just have to jump into this discussion. Right now I am making preparations for a black-tie wedding in NYC. It has been delayed for two years because of the pandemic. Guess what? My condition has changed a lot in two years too! I’m actually feeling dread and anxiety about two events that require formalwear, with Spanx and elegant footwear! I’m returning my 3rd pair of shoes, and I just cut the elastic gripper legs off the shape wear! Trying to look fun and elegant, while minimizing my suffering, is a real effort! I’m making light of the situation, but I really don’t want to be the grandma in orthopedic shoes at my age. Balancing the reality of living with SFN against the desire to appear lighthearted is tough. Wish me luck in my $160 dress shoes!
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