Going to the negative place...moving back to the positive place.

Posted , 9 users are following.

Headed back to work in two weeks. I'm literally frightened to go back. When I was last at work I went through a terrible uti and LS flare up. I couldn't sit and was going to the bathroom every 15 minutes. I was so uncomfortable I couldn't concentrate on my work. I had to take many days off to go to numerous doctor appointments. At the same time I was caring for my elderly frail parents. As the days get closer to my return to work I get more anxious. I'm afraid that the stress will cause another flare up. Intellectually I know that I'll be okay but I worry. I also made the mistake to go to another LS support site and everything I read seemed so negative to me (ex. Clobetasol doesn't work, clobetasol won't stop the scaring and fusing.) I was feeling okay in terms of the LS. I'm healing slowly but healing. The skin still feels thin and now I'm experiencing nerve pain. I believe it's part I of the LS but also from sitting in  an awkward position at work to avoid the bladder and vulva discomfort. My left pelvic, sciatic, leg, foot, left side of my vulva and clitoris hurt. I mentioned it to the vulva specialist. She thinks it's neurological nerve pain. I hope  this will be resolved before I return to work. I became weepy and sad for bit but I am back to being proactive. I will schedule an appt. with a neurologist, acupuncturist and chiropractor.  Any wise words... Don't want to  focus on all the negative as if there is something positive of LS. Well I think Morrell may have said something like this," we go  for  a check  up twice a year which is a good thing since we get screened for cancer more  often than most women" Morrell sorry if I didn't get your words right. I'm thanking you for the wise words. If it's not Morrell thank you even if I've forgotten your name. 

1 like, 22 replies

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  • Posted

    Thank goodness for clobetasol! It helps me!!!
    • Posted

      Yes thank goodness for clobetasol and halobetasol. It tamed this LS. 
  • Posted

    Best of luck. I know stress is a factor in my flare ups so you are doing all the right proactive things.  I am curious about your acupuncture comment. Has anyone had success with acupuncture?  
    • Posted

      To be honest the acupuncture has worked in reducing anxiety  and allergies when I've had a treatment coupled by a massage.  Some acupuncture will be reiki or other types of massage with the acupuncture treatment. 
  • Posted

    Hi Wil. I have something that might help you. I've been reading an article in Harper's Magazine about doing your own research before asking your doctor(s) for a diagnosis. One patient the journalist mentioned had interstitial cystitis. The point of this section of the article was that 'Interstitial Cystitis' is a label given to otherwise unexplainable bladder trouble, but no cause is known. The upshot was that there are physiotherapists who specialize in unlocking spasms of the pelvic floor. Patients who've suffered with IC have had this treatment and been cured. This sounds right to me. Both my mother and a good friend have suffered for many years from IC. Your sciatic and leg pain make this even more likely to me.

    The second thing I need to tell you is that I went for acupuncture to a highly qualified, Beijing-trained former professor of Traditional Chinese Medicine (not a 'healer' with a few courses, in other words) for a whole year, often more than weekly. I boiled teas from the paper bags full of forest floor she gave me, I went off sugar as instructed. I'm convinced she had the best intentions, as a specialist in chronic conditions like Rheumatoid Arthritis. The thing she must not have known about was the Koebner phenomenon. This is skin trauma (anywhere) causing flare-ups of LS and psoriasis. My psoriasis went up and down that whole year. The acupuncture took down the swelling in my face and the angry rashes on my torso, then caused a new round. Every week.

    These days my substitute is shiatsu massage therapy, a puncture-free Eastern energy work that I feel balances the qi. (I had experienced the flow of qi as a tai chi practitioner, so it isn't placebo effect.)

    I really hope that helps. Let me know.

     

    • Posted

      Hi Morrell, 

      went to new chiropractor.  She was really thorough in her initial assessment. Of course everything was misaligned from leaning and sitting on my left buttock to avoid the pain from avoiding the uti and LS pain when they where both very active.  Also I sit in front of a computer all day at work which aggravates the situation. She  also said that Cipro (antibiotic I was given for uti) May have caused the tendon pain. She showed  me how the nerve endings shooting off the spine became irritated firing off the pain sensation. Also my neck was misaligned.  All in all I spend 2 1/2 hours in her office for an assessment and treatment. I actually feel better. No strong shooting nerve pain down my groin, vulva and leg. I've have a follow up visit next Friday. I think the adjustment, heat treatment and massage did the job. I'm almost in disbelief that I feel better but very pleased and grateful. Thanks for your support. I didn't go to the acupuncturist because I was doubtful it would help with problem. Thanks for your input, suggestions and support.

    • Posted

      Hi Wil, so gald to hear this! We just don't need complications. I had lower back and butt pain after bending to harvest my onions. Fortunately it was just muscle strain and has resolved a week later. Last thing we need is an extra pain in the ass!
    • Posted

      Glad, not galled.

      Geez, I wish this site had either spell check or the opportunity to edit our posts.

  • Posted

    Things will get better, they almost always do!  Most of the women on this site have gone through nasty times, but we survive!  Take care, try not to worry as stress is an enemy!  I will be thinking of you and wishing you a speedy recovery! xxx
    • Posted

      I forgot to mention that besides getting a chiropractic adjustment. I enrolled in an 8 week course based on Jon Kabat-Zinn's teachings and books. The workshop is called "Mindfulness Based Stress Reduction. Yes...stress and anxiety are my biggest problems. The workshop will help with coping techniques to manage my stress . 
    • Posted

      If you have the energy and time to share with us your J Kabat-Zinn's workshop, it will also reenforce what you are learning.  Although I do mindfulness practice, having a systematic approach according to Jon's should be really healing.  You are doing so well in caring for yourself in many many ways, Wil.  Rooting for you.  Keep us posted.
    • Posted

      I'm very familiar with MBSR. Excellent, wonderful thing to do. There's a lot of talk in this forum about not just treating the symptoms by finding the 'real' cause. I think we agree what that is. And it's completely in our power to learn to be present, to pay close attention to what's happening now. Striving anxiously for magic cures is not that. We of course can't reverse heavy scarring, but we can slow down the inflammation.

      Looking forward to hearing more!

  • Posted

    The vulva specialist will have no knowledge of what is causing tour sciatica pain etc but the chiropractor will. It sounds like the piriformis muscle and tight muscles around the pelvic area which could cause pain and you are out of alignment which is causing the pain. The chiropractor will be able to sort that out and give you some exercises to do so this will go away. Acupuncture did not work for me but other people have had success with it, it depends on the acupuncturist and what is getting treated. Don't stress or worry try and keep busy to take your mind off things.
    • Posted

      Ran (not really drove)  to a new chiropractor yesterday. Had a full assessment and adjustment. I feel much much better. It's almost hard to believe I was living this that pain for several months. Thanks for the great reminder and suggestion that a chiropractor would help. 
  • Posted

    Agree with everyone.  Acupuncture did not work for me.  Shiatsu has a better calming effect (provided you find a good one).  Your body knows when you have a good one.  Second point, mind over matter (easier said than done, for sure).  My experience, things seem to erupt to our emotional reaction all at the same time.  We learn to accept and develop more respectful relationship to our body's needs vs what 'we want' and we also learn to become more proactive i.e. research, listen/ask and change our attitude towards our body... this condition requires increasing patience and finding out for ourselves what works better than others.  We obviously have not found a cure-all yet.  We are all in the same boat.  Take many deep breaths and if possible, separate your 'imagined fears' from reality.  We all go through this.  
    • Posted

      Didn't go the acupuncture route after giving some thought but went to a new chiropractor. It really helped immediately. Thanks for the suggestions.

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