Thank you SO much Jo*mar, Jenny, and (BrokenWings) for your messages.
It means so much to me to connect with others who’ve are dealing with the same thing (and makes me feel like I’m not crazy).
I am new to sites like this, but I’ll definitely try to find all of your earlier posts to learn more. Also, thank you for all of these great tips. I love the hairdryer idea (was thinking of just cutting my hair off soon to avoid having to dry it but I like how it covers my scars ), the idea of a mirror to serve as posture police and will look into some of the pain management/therapies you mentioned that I’ve not heard of (Miracle Ball, light therapy pads, kinesio tape). I brought up tissue adhesion with my osteopath today, but he didn’t think I had that. I’ll still look into it more though.
It’s so interesting that all of you are stressing the importance of good posture—when I bring up the idea that my TOS and current pain are related to computer use/posture, all of my doctors (aside from the acupuncturist and occupational therapist) seem to think it’s less important. I use to be a competitive swimmer growing up and in college. But that was 6 years ago—they all seem convinced that my blood clot/TOS was from years of swimming and when I bring up limiting my computer use and how I work on the computer 12 hrs+ a day, or how I feel better when I take a break, they seem to find that irrelevant---it’s frustrating.
My most pressing challenges:
1. I feel like I’m a 26 year old in the body of an 80-year-old. I wake up and my neck hurts and then it hurts on and off throughout the day. Sometimes the pain is just on my sternocladomastoid muscle over my surgical site and other times it’s my whole front chest area, backs of my shoulders or upper back. It often seems related to the chair I'm sitting in, as in a class with an uncomfortable chair my neck seems to hurt even more. It usually bothers me most at the end of the day, and the only thing that feels good is to bend over and put my head between my legs. I’ve started sitting on an exercise ball, bought a new ergonomic chair, and also have created a standing workstation at home and at my office so I can work on the computer while standing up which helps some.
2. I'm so sensitive to carrying even light amounts of weight. It freaks me out. My husband and I were thinking of starting a family soon, and I don’t know how I’d do with carrying any extra weight, yet alone constantly carrying around a heavy kid! For example, I carried a backpack that had maybe five or 10 pounds of material in it for a few five-minute intervals between buildings and felt terrible for days afterward. Sometimes even my winter coat feels so heavy on my shoulders that I find myself darting into stores to take my coat off to give my shoulders a break. I bought a bike (I live in a city where there’s not much parking) to avoid carrying my backpack, but now that it's starting to get colder, I'm not sure what I'm going to do. Simple tasks like cleaning our apartment or putting dishes away seem to wear my arms out. I don’t want to baby them either though.
3. My fingers and arms tingle and ache whenever I type or use a mouse. Even just for 10 minutes, I bought a new ergonomic keyboard and mouse which make it easier. But I feel my body is starting to reject typing on this equipment too. I have Dragon, but find it tedious to use since I constantly have to correct it. It's also an older version that won't let me search the web. So I'm thinking about upgrading, though it’s expensive.
4. My biggest concern is how I’m going to make it through next semester and whether I’m doing long-term damage to myself. I’m in a pretty intense PhD program and only in my second year of a five/six year program. I have a few weeks off and then it’ll be back to 80 hour+ weeks reading, writing, typing, transcribing, studying, etc. I purposely took a lighter load this semester, so I'd have more time to devote to taking care of myself, and yet I still feel I’m getting worse and not better. I spoke with my advisor about it, and she’s supportive, but I still have deadlines, finals, etc. which seem to set the pace and all the time I devote to my health makes me more stressed since I have less time to get my work done.
5. I’m afraid that I’m going to get worse and this pain will be chronic or get even worse (or my symptoms will continue to get worse since from reading the site, many people have worse symptoms than I do). I’m also frustrated as I’ve seen many great doctors, but no one seems to really get it (or me!). I agree that I need to start taking things into my own hands to figure out the right customize plan for my body.
6. I’m afraid I’m going to make my husband and I go broke the way I keep spending money on doctors, ergo stuff, yoga, meds, massage, etc. I feel like I am just throwing money at anyone or anything that might help out of desperation and it’s eventually going to run out (especially since I’m on a student’s stipend).
What I’ve tried:
1. 4 months of physical therapy which started out great (learned a bunch of shoulder/arm strengthening, opening, and stretching exercises that I still do every other day. I felt much better at first and had one week where I was pain free on a vacation a month into PT (when I stopped working on the computer). That’s the last time I was pain free (about 5.5 months ago). While my back pain was better, I started getting new pain in my neck area, particularly over the surgical site that still bothers me now nearly every day. The PT was stumped on how to heal the neck and I started doing neck strengthening exercises which irritated it more and the PT thought I wasn’t getting anything more out of it, so we ended our session (though I still do the original exercises every other day).
2. 3 months with an osteopath who I’m still seeing who put me on muscle relaxers at night (which at least helps me fall asleep as previously it took about an hour to fall asleep each night since I always felt so uncomfortable). I brought up today with him the kinesio tape and my hypermobility (per your comments) today and he may refer me to someone else if I don’t start showing improvement in the next two weeks who’s used kinesio tape before.
3. Limiting my computer use to 4-5 hours a day with ergo equipment/set-up (ergo chair, keyboard, setup, mouse, standing work station) an using RSIGaurd (a great program that forces me to take stretch breaks every 30 minutes or so depending on how much I’ve typed).
4. Light yoga every other day
5. Acupuncture every 2-3 weeks (1st and 3rd times didn’t feel any difference, 2nd and 4th times improved pain for a few days
6. I’m thinking of starting pilates to strengthen my shoulder girdle and core area—have a postural assessment for tomorrow—hoping that may be good. Has anyone tried pilates?
7. Also thinking of trying massage on a friend’s recommendation (though even more $...)
If anyone has any comments or advice on my top concerns or thoughts on therapies that have/haven’t worked for you that I’m also trying or pointing me toward sections of this website that might be helpful, I’d greatly appreciate it. THANK YOU again for your support. It really gave me hope today reading your messages to know that I’m not alone.
Thanks again!!
Julia
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