July 31, 2013 at 11:38 am #10600
Hi guys, I’m so glad I’ve found this forum. I hope Matt or anyone else can help me out with a few problems I’ve been dealing with for a long time. I’ve been to every hospital, clinic, treatment center out there, but nothing has helped.
I’ll try to keep it short, since it’s a long and detailed story (yawn). I’m a Dutch girl, 23 years old, I’ve had an eating disorder since the age of 17, and since 2 years my health has been detiorating.
My weight has fluctuated a lot over the years, but mostly I’ve been at a healthy weight. Currently I’m severely underweight (about 99 lbs at 5 ‘7) and this has been like this for about 1 year.
My biggest problem is the daily muscle pain. I’ve been diagnosed with “chronic myoascial pain syndrome” but the weird thing is that I don’t respond to any treatment. Dry needling, trigger point therapy, I did them all. Nothing seemed to last….The pain kept coming back.
I’ve also been diagnosed with CFS a few months back, but since eating mainly paleo (I did the low carb version, that’s why I lost so much weight. I’m an ectomorph who loses weight easily) and supplementing my energy levels went up. I’m still tired, but not exhausted anymore. Oh, and I also have leaky gut. Yay me!
I was also extremely active, I over-exersized for a long period, and after doing that for about 3 years my first muscle pain symptoms began showing up. They spread out over my whole body and now I can barely walk or stand longer than 5 minutes without being in extreme pain. My calves and legs are the worst. My arms are also burning as I’m writing this topic.
So my question is: is there anyone who knows anyone with similar muscle pains like I described and has it something to do with my eating disorder, weight (my pain symptoms started when I was at a healthy weight, but over exersized) or anything else? How do I get rid of the pain? I’ve also been in a rehabilitation center for a few weeks where they explained my it’s chronic sensitization, where the brain is overstimulated and thinks it’s in danger constantly, hence the tense muscles and pain.
Long story short; I don’t know what to believe anymore! Any experts out there? I’d love to hear your opinions!August 1, 2013 at 12:06 am #10646RobModerator
@dvknutri- I don’t know much about your specific condition, but I can only imagine it has much to do with your eating disorder. It sounds like you’re in a rehabilitation facility to deal with that, and in your shoes, committing to the recovery process would be top priority for me.
Your Eatopia is a great website for eating disorder recovery, and here is a post that deals with pain during recovery. I encourage you to read through as many of the archived posts as catch your attention.
You might also consider participating on the Eating Disorder forum for other support. Good luck!August 1, 2013 at 12:10 am #10647Matt StoneKeymaster
I usually recommend eating first, normalizing metabolism, and then see how you feel. When cells don’t produce energy properly anything can go wrong, especially things that fall on the CFS and Fibromyalgia spectrum. Best of luck.August 1, 2013 at 12:27 am #10652heatherdukeParticipant
@dvknutri, when I was your weight (we’re the same height) and my ED was getting to its worst point, I was in crippling pain all the time too–I remember once trying to walk to the train station to catch a train and just sobbing in pain because my legs felt like they were breaking. As you mentioned, even writing out an essay in class was painful and exhausting.
I’m definitely not anywhere near fully recovered, but even speaking from a quasi-recovered position I can say that 98% of that kind of thing is gone. There are still lots of other things to deal with, of course, but I no longer have those all-consuming muscle/bone/joint pains that mean just standing to take a shower completely wipes you out.
So basically, you can get rid of the pain by eating and gaining weight. It feels like a shitty answer, I know, but if you’re in a center hopefully you’re getting on the right path to recover. I can’t encourage you enough to read up on Matt’s and the Youreatopia guidelines and follow them as best you can; best of luck and honestly, eat up–right now food is your best medicine.August 1, 2013 at 3:44 am #10662
@Rob @MattStone @heatherduke Thanks so much guys! It really helps this in my recovery to gain more and work hard on my problems. The sad thing is that my observation time at the rehabilitation center for chronic pain has just finished after 8 weeks, since they feel I need to gain all my weight back before I can continue with their treatment plan. Understandable, but very frustrating. They feel like I’m still to fragile to work on putting on any strength. Which I can completely agree on.
@heatherduke You can’t believe how good it makes me feel to hear I’m not alone. I’ve never spoken to a girl with an Ed who had the same muscle pains. I don’t have joint pain, but muscle pain in extreme. Did you also get treatments for your pain or didn’t that help either? That makes me hopeful it will diminish once I eat more. As scary as it is….
@Rob I have read all @Matt his posts on eating disorder (especcialy Coldmember, since he’s Dutch as well) and they were very helpful. I’m scared as hell to eat as much as 3000 kcal per day and maybe going even over that. I’m getting help for my Ed, but it’s still very hard. It would make it much easier if I could do some physical activities with it, so I won’t feel as full all the time. But I need to see the bigger picture here. I’ll definitely check out Your Eatopia website! Bring on the comments!August 1, 2013 at 6:36 am #10667DutchieParticipant
@dvknutri Another Dutchie here. To alleviate your musclepain a bit,you could try spraying a bit of pure magnesium oil on the painful parts rigth b4 going to bed.
I have a small bottle from Zechsan which i bougth at the healthfood store,but some pharmacies(drogistery) sell it as well.
Or you could take baths with epsom salt.August 1, 2013 at 9:54 am #10674godschildParticipant
I had all of those symptoms and more. Deffinatly get this problem fixed before your whole endocrine system crash or other systems, heart, lung, kidney, ect.
Sory, I just had to put that to scare you to make the biggest effort towards recovery as you can.
But, I Remember having soooo much muscle pain that the couch would hurt me. If you gave me a light back rub, I’d scream and/or my back would spasm and twitch. I think you get the point.
I didn’t even know that I had an eating disorder at the time, I just thought I was sick. I quasi recovered my weight from 87 back to 111-112ish in a short version, but I still had a lot of endocrine problems left over and my metabolism was still slow, so I started eat for heat. I’ve already noticed a ton of improvements. This morning my temp was 98.8! (up from 97’s and 96’s at my lowest). It took 3 days to get to 2500, 4 days-ish around 2800, then the rest 3000+. last night I got 3700!
It is possible, just be consistent. It will be a lot harder at first with no hunger signals, but as you get better, it gets easier.
Good luck, praying for you!August 1, 2013 at 1:36 pm #10689heatherdukeParticipant
@dvknutrie, I was too stubborn to try anything to alleviate the pain before I was kind of dragged into recovery, so I can’t really recommend anything to do in the meantime. I can say that things improved incredibly quickly once I was eating a recovery-level amounts of food, however, so the sooner you can commit to that the better off it will be, I think. (You mention exercise would make eating easier–don’t give in to that impulse; it will just make things worse in the long run if not immediately so.) Impossibly scary and confusing and hard, but your life will improve so dramatically you can’t even comprehend it from your starting position. Hopefully some hunger signals will return for you soon and help you out.
And your team will be able to do you a lot more good once you’re farther into recovery, since a lot of the pain will resolve itself with the application of copious amounts of food. If there is any underlying stuff going on (which, honestly, I think this is more starvation-caused than anything) they’ll be able to figure it out far more easily without starvation effects muddying the waters. Eating and recovering your metabolism is the best treatment for your pain at this point.
Kind of a side note, but some of the pain you’re experiencing might be from the demyelination of your nerves, where your body has eaten off the protective fatty coating that sheathes each nerve, leaving it exposed, so that even just brushing the skin becomes incredibly painful. This also resolved itself fairly quickly once I really committed to recovery.
Again, best of luck!August 1, 2013 at 2:27 pm #10697RobModerator
One thing I remember from that ‘anorexia rehab’ post that Matt wrote: you *want* to feel shitty during this phase, because that means you’re not doing the unhealthy stuff that artificially gave you the buzz to get you there. You’re finally giving your body a reason to upregulate those pleasure receptors so that you don’t need the ED buzz to feel decent. If you don’t do this, or if you slow play it through exercise, etc., you may just be extending the discomfort.
Feel crappy now, get through it, and move on to the next step of recovery. Obviously easier said than done, but that’s the idea.August 5, 2013 at 3:07 am #10885
@Dutchie I already spray myself with magnesium every night before going to bed. But it doesn’t seem to do much. I will def look into the other reccomendations.January 22, 2014 at 12:26 am #14732mmmfoodParticipant
Dvknutri, I hope you are doing better. I’m a male, 19 years old. Been refeeding for 5 or 6 months off and on. I’m serious and committed to it now. I realized a couple of days ago that while I was not severely underweight when I started, I was behaving just like someone with an eating disorder- obsessive about eating too much, starving then binging, etc.
I was wondering how refeeding has improved your fatigue, pain and everything else?March 8, 2014 at 1:51 pm #15758AnemoneParticipant
@Rob, Thanks for the link to Your Eatopia. I started adding more variety to my diet a week or so ago and all of a sudden I’m exhausted and achy. It’s really good to know what’s going on, especially when my first thought was “I’m eating something I shouldn’t”.December 16, 2015 at 11:43 pm #17808payneParticipant
I’m not sure if you still actively check for replies Dvknutri but I have a lot of information based on both personal experience and medical research. Nothing against those who have commented so far but just recommending eating more is a pretty blanket attempt at trying to offer help. I do not fault those for that as you do not understand what it is like to rendered unable to carry out the tasks of daily living because of muscle pain and chronic muscle tension. Please respond back Dvknutri so we can try to help you figure out what may be causing the chronic state of the pain. I have not fully figured out everything for myself either but I’ve been actively learning for 3 years. Nowadays it’s best to do research on your own and take a very serious interest in your health since the Healthcare world doesn’t even bother trying to do investigative work. I’ll leave it at that for now, looking forward to a reply.
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