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Update / Recovery :)


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I haven't been on in a while. Been busy lately. So I thought I'd fill you all in on what's going on

5 weeks ago I flew out to the Mayo. Had an abolute slew of tests done, which all came back normal except for some vitamins were off and blood pressure was low. Namely vitamin D was low and so was my ferratin. A combination of being indoors/diet caused that.

Reason for the tests was that I was seeing a doctor who had a suspicion of what I may have - central sensitivity syndrome. There is no specific test for it - it's a diagnosis of exclusion. Ruling everything else out first.

So... I was enrolled in the PRC (Pain Rehabilitation Center). It's a 3 week long, 5 days a week + activities on weekends program. I'm kept busy from the time I get up to the time I go to bed. I just completed week 2 and to my surprise I'm feeling GREAT. No meds or anything. Just some salt tabs to raise my blood volume (kept those up along w/ salty foods. Tilt table test is negative now :D) and vitamin D since it was low.

I went for a hike today. First time in over a year. I've been driving around, going to the movies, hanging out with friends. I feel normal - I have my life back. I don't feel perfect, but I feel 90% of the way there.

I'll share all I can with you all about the program and what helped me - hopefully you can give it a try since a lot of it is lifestyle/meditation (should be within forum rules right?). I'll type that up later when I get a chance since it is a LOT of information. As in: take me a few hours to type. So I won't be able to do that for another week when I have the chance to sit down and hammer things out.

Anyhooo...... I just wanted to update you all of my progress. If you have the time and insurance will cover it, I'd highly suggest giving the PRC a shot. If anyone cares to know, I was seeing Dr. Kevin Flemming at the Mayo in Rochester. He's the one that started me down the path of central sensitivity and the treatment

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This is wonderful. Very happy for you. Unjust returned from Mayo MN and was given dx of Central Sensitization and POts. Can you share your symptoms? My dizziness, lightheadedness, gut motility issues, tachycardia at times began in 2007 after the birth of my son. Suspect dehydration while bfing opened me up. I also have intensely tight muscles most of the time (called myofascial syndrome) and now bothersome like a vibrating current in legs and a tiny tremor in legs and hands. Almost everyone of my Symptoms are explained by PotS. Intensely painful slow emptying (feeling blocked) totally related to fluid level. I was sent home with salt tabs too and they have helped the exhaustion, tachycardia during meals and lightheadedness. But I'm left with these tight muscles and the "current feeling" that leads to tremor. I'm not sure if these are POTs symptoms. The docs I saw offered nerve blocking meds etc but I wanted to know what is causing it, what makes it worse etc. I am highly sensitive to meds to I worry about what I should take. Again, so happy for you!

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Symptom wise I had:

  • Fluctuating body temperature
  • Sensitivity to stimulation such as light, sound, touch, temperature
  • Brain fog even while sitting
  • Exercise intolerance
  • High sensitivity to most drugs (namely the side effects)
  • Heart palpitations
  • Feeling either jittery or like it was hard to move - feeling like I am in a vat of cold honey lol
  • Weakness
  • Loss of appetite and weight loss
  • Constipation and diarrhea (sorted out via diet)
  • Restless legs when cold
  • Poor memory/concentration
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Ur at mn? I would love to hear more about why they diagnosed CS rather than just POTS. Can't wait to hear more.

Because I had some pots symptoms but that wasn't everything. Sitting vs standing made no difference. And I was sitting when my original symptoms started. So POTS didn't quite fit

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Well done! I hope you continue to feel good. I know many of us would like this sort of diagnosis, but here in the UK ME/CFS/POTS/AN/PN/EDS etc don't seem to get much recognition. Hard to get any help at all really and if you are on a low income, it's even worse.

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That's awesome. I'm so happy for you SnowDrifter. It's fantastic to hear about such a huge improvement. Thanks for sharing. Will look forward to hearing more when you've had time to recover.

Janet

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Awsome news SnowDrifter. We need more of these uplifting types of posts :)

What sounds interesting to me is the fact that - like you - most times, my symptoms do not seen to be orthostatic in nature.

Looking forward to hearing the rest of your story.

blue, I just posted some articles on Central Sensitization in a different thread. See if they help.

Best,

Alex

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What types of activities did they have you do at the PRC?

Daily schedule is as follows:

8:00 AM - Morning stretch/walk/wakeup

8:30 AM - Set and review goals for the day

9:00 AM - Class on various stress/symptom management techniques. We analyze what goes on and how things are cyclic in nature. For example how POTS causes inactivity and inactivity causes POTS. We also review how to break said cycle. At the end we will have "relaxation" which is where we either put on a relaxation CD or calming music and do controlled, meditative, diaphragmatic deep-breating for 15-20 minutes. For me this is what really helps - it does an awesome job of calming the autonomic nervous system

10:00 AM - Physical therapy. We work out under the supervision of the staff. There is a high emphasis on cardio and reconditioning

11:00 AM - Lesson on coping strategies. Similar to the 9:00 AM class but more emphasis on battling what happens and dealing with shortcomings in a healthy, productive manner. We do this one with our parents too

12:00 PM - Lunch

1:00 PM - Continuation of the 11:00 program.

2:00 PM - Recreational therapy. This is where we go over skills like time management - how to keep ourselves busy and avoid the 'ol couch. We also plan evening activities and our weekends

3:00 PM - Another relaxation/ meditation session. We also review our goals that we created in the morning and make new ones for the evening. We will also do tai chi/yoga. Once more with a meditative emphasis

4:00 PM - Recreational therapy. This is where we do hands-on projects. Helps get other parts of our brain engaged. And, quite honestly, is a pretty fun way to end the day.

5:00 PM - Done.

Onward - evening activities. Like going for a walk, dinner, pool time, etc

I'll go into a lot more detail when I do a writeup in a week or so. But that's the basic overview

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