National Eating Disorders Association

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FaithAndLove
Burning pain and joinaches during recovery

Dear people <3
I am 19 years old and I live in the Netherlands( So sorry for my bad English). The reason why I write here is because in my country I cannot find the answer to my question. So I will try it here.

I have had anorexia and orthorexia for four years. I ate hardly and exercise too much. I am 3 months in recovery now and mentally I feel fine. I am happy and eat a lot and healthy(and sometimes unhealthy, but that’s OK I suppose  ). I have not achieve my target weight yet, but I am on the right road.
But… 2 months ago, in recovery, I get a terrible burning (nerve pain, I think) pain in both my legs from hips to toes. Especially in my knees joints and calves. I also have tingling and a numb feeling in my legs and feet and and I cannot walk. The pain keeps getting worse and now I have pain in my legs, foot, arms, fingers and hands. All my joints hurt and when I try to walk it gets worse.The crazy thins is , is that the pain is migratory; it goes from one joint of muscle to another.

The doctors don’t know what this is and they don’t recognize the pain by anorexia patients who are in recovery. They say I exercise too little or that I have to gain weight so I get more fat and the nerve pain will disappear. Actually, everbody is saying something differently. But I cannot walk so they are asking something impossible.
I am afraid this pain is the consequence of my eating disorder, too much exercise and no eating at all, but I didn’t have the pain during my anorexia. I am a little confused.

So, is there some people who recognize themselves in my story and also had terrible joint pain?
Thank you for reading my story.
Bigs hugs to everbody
Much love
FaithAndLove

3kids2dogs1cat
pain

Hi FaithAndLove -

Welcome to this forum! I'm glad you're reaching out to this community seeking shared experience with the pain you describe. It really sounds awful! I am so sorry you're experiencing that. It must be so frustrating after all of the hard, hard work you've put into your recovery -- and congratulations on that!

I would like to encourage you to pursue a better explanation than you've gotten. It sounds like no physician you've seen has the right experience and/or has done enough investigation. Have you seen a neurologist? When I was severely underweight, I did experience a great deal of numbness and tingling around my knees, which was resolved by medication prescribed by a neurologist (as I recall). However, what I experienced was not pain, and certainly not as debilitating as what you're describing. Maybe others on this forum will have some experience with what you're describing. In any case, you owe it to yourself to get to the bottom of this as soon as possible.

I hope that you will continue posting.

FaithAndLove
Thank you

Hi 3kids2dogs1cat ,

Thank you for your reply. I am really grateful you took the time to help me. It is so sweet what you have written <3.
I do have seen a neurologist but he only thing he said whas that I have to gain weight as soon as possible. He was not sympathetic and very biassed about my eating disorder. Moreover, he ( what I understand) didn't want to prescribed some medication because of my low weight.

It's weird to say but during my anorexic period I felt much better. in the area of the physical ofcourse. But I don't want to give up and I will not do it !

loves
Annabel

lovetowrite81
Hi FaithandLove

Hi FaithandLove,

Just wanted to reach out to you and see how you have been doing with the pain you were experiencing? And if you were able to gain any more insight on what treatment route to take? I too have a history of orthorexia and only recently have I started experiencing leg pain (5 years or so later)- but never really linked it to my ED. Several doctors have reaffirmed that it is a result of anxiety manifesting physically even when I haven't been struggling mentally. The power of mental disorders on body, mind, and spirit. Anyways- it would be interesting to see if there could be more of a connection in my case also... hm.

So glad you have been doing well mentally- I hope you have been able to continue growing on your recovery journey. Keep us posted! <3 We are all here for you on the forums.

-Lovetowrite81

AnjaOak
Feedback (lovetowrite81)

Hi lovetowrite81,

How are you doing? I've just replied to this thread. I am experiencing exactly the same symptoms as FaithAndLove, but only since recovery. It's debilitating... Any news?

lovetowrite81
Anjaoak

Anjaoak-
I'm so sorry that you have been struggling. I apologize for the late reply to your post. It is absolutely horrible- I don't wish that kind of pain on anyone. I am not sure if there was a direct link between ED and pain, or my anxiety, other factors, etc. I have found that whenever I'm off anti-depressants, the joint pain comes back again. I recently weened off medication again after several years, so I am curious to see if it comes back. Unfortunately I don't have any miracle solutions- for me it has been primarily finding the right medications for me in terms of anti-depressants to control my anxiety and physical effects. As I'm not a medical professional, the best advice I could give you would be to seek help from a doctor. What are your thoughts on this?
Again, I know it's so hard- hang in there! How has recovery been going otherwise, how are you feeling mentally? Keep us updated on how you're doing, we're always here to listen <3

AnjaOak
Yay!

Hi!

Oh my gosh, thank you so much for your response! I have been trying my utmost to get hold of FaithAndLove - even asked the organisation whether there was any way they could pass on my details, as I obviously can't track her. But there is too much red tape. :( So desperate to get hold of her... I wonder what happened in the end.

I have been considering going back on medication, as I took it a few years ago after a nervous breakdown. I did also have strange neural sensations that resolved with the meds, but they were very different to this. Hesitant to mask the symptoms until I've identified the cause. Feels wiser, for now. I do also struggle terribly with anxiety though. Currently, the doc seems to think that some kind of acquired dietary intolerance could be involved, which can sometimes cause a strange autoimmune responses. So I'm also on a serious elimination diet. All of this, on top of recovery, has been awful.

I saw many of your other posts... Are you a Christian? I am, and would find it so helpful to be in contact with others. It can be such a uniquely isolating and lonely experience.

Thanks for the support. <3

_admin_moderator
Post slightly edited

Hi AnjaOak: thank you for posting to our forums. We slightly edited your post to remove specific brand names and references to weight-related numbers, which can be triggering to others. You can read our guidlines here: https://www.nationaleatingdisorders.org/forums/community-guidelines Please keep posting.

lovetowrite81
AnjaOak

Hi Anjaoak,

It's so good to hear from you. Yes, I am a Christian! I am excited to have connected with you as we both walk with God & the recovery journey as well. I am glad to know that we will be able to support and encourage each other coming from like-minded places. My faith-based support is limited right now, as none of my family members are Christians and I am not currently plugged in at my church outside of attending weekly services. When did you come to know Christ? I am looking forward to hearing more of your story!

Hopefully FaithandLove sees this thread soon and can offer more insight into the pain you are experiencing & her experiences. It does seem like you have been going through a lot- that's interesting about the dietary intolerance. I am sure it must be difficult to have to restrict certain foods while in recovery. I am glad to hear that mentally you feel in a good place though, that's awesome! That must be so discouraging to not be able to gain and see results of all the effort you are putting in, but keep doing what you're doing and listening to the doctor's recommendations. You are doing what you need to & results will come.

Again I'm really glad that you are here on the forums & I hope you will come here anytime knowing that we are always here to listen. You are amazing and will get through this- I encourage you to keep leaning on the Lord in all of this. I'm studying the book of James and read this Scripture this morning: "Consider it all joy when you face trials of any kinds, because the testing of your faith produces endurance- Let patience have its perfect work so that you may be perfect and complete, lacking nothing." God is present in the struggle, calling us to depend on Him in all circumstances. He is growing us, restoring us, even when we are hurting and can't understanding what He is doing. Keep persevering, knowing that this suffering does not compare to the joy that is coming !

<3 Lovetowrite81

AnjaOak
Lovetowrite 81

Hi!

Sorry for the delayed response. Thank you so much for your encouraging message! It really means a lot, and I have read it more than once over the least few days.

I've been a Christian for about 12 years (since I was a teen). The development of my ED was a very hard thing to deal with spiritually, as I knew full well that I was serving an idol, and would only break myself upon it. But in some ways, it's been even harder to grapple with God now, in recovery, and to not feel like I'm being punished somehow... But I know He has His reasons, and that He is sovereign over all things - including illness and suffering. That scripture from James is very apt. :)

I've also been clinging to a passage from Romans 4 (referring to Abraham): "In hope he believed against hope [...] He did not weaken in faith when he considered his own body, which was as good as dead (since he was about a hundred years old), or when he considered the barrenness of Sarah's womb. No unbelief made him waver concerning the promise of God, but he grew strong in his faith as he gave glory to God, fully convinced that God was able to do what he had promised."

Also Psalm 73: 25-26: "Whom have I in heaven but you? And there is nothing on earth that I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever."

I'm sorry to hear that you don't have a solid Christian community at the moment... that must be very tough. Staying strong in the faith on one's own is not easy. But keep persevering as well, and encouraging the rest of us on these forums. And prayer is always welcome. I'm in Cape Town, South Africa, by the way. :)

lovetowrite81
Anjaoak

Hi Anjaoak-

I am very confused- I created a new thread called "Anjaoak" earlier this week and responded to this but do not see it there, so I'm not sure what happened. I suppose I will write another post-- here goes take two!

How have you been feeling with your joint pain? I have been praying that you experience some kind of relief soon!

I also came to Christ as a teenager! I can totally relate with your feelings about ED impacting spiritual life- and turning to food to fill what only God can. In my time of restrictive eating, I was unable to give up that control. And when I struggled with binge eating in college, I knew deep down that food would not fill the emptiness, that only God could fill that void. But as much as we recognize that & know that God alone can satisfy, we have to recognize that we are fighting a battle with a disease and it is not our fault or a result of moral failing. There are much deeper psychological & biological roots.

Yes-- we do have to take heart that God is sovereign & tells us that He is working all things out for the good of those who love Him ! He is for us and not against us. As much of a struggle as ED is and the process of recovery, we can cling to God and know that He is growing us, renewing and restoring us, even here. Continuing to draw us into deeper dependence and closeness with Him, and shaping us into the women we're made to be in Him!

Thank you for the Scriptures you shared, what a beautiful reminder of God's faithfulness to us to fulfill His promises. That He is unwavering and our strength in the face of our weakness, in whatever challenges we face on earth. It reminded me of 2 Corinthians 4:16: "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.' When we recognize that everything is temporary, that our struggles do not compare with the joy that is to come, that is so freeing. I have been praying that God would give me an eternal mindset.

Hope to hear from you soon with how you're doing in your recovery and how you are feeling! I am so glad that we connected from across the world! I am so excited that we are able to support each other here <3

<3 Lovetowrite81

AnjaOak
Lovetowrite81

Hi there!

So odd - I actually saw the thread, read it, and then returned the next day to reply, when I also saw that it had disappeared. Very strange indeed! Also, for some reason, the site won't let me post a new topic... so I can only reply to existing forums. Weird. :/

The last week has been tough... I am struggling immensely with discouragement. It honestly just feels like this is never going to get better. I don't have any joint aches, but it's just the constant nerve pain in my feet and legs, which also causes muscle twitching and spasms (typical of peripheral neuropathy). I've been trying to be more active, as I really miss exercise, and have become totally fearful of doing anything in this condition. I also really miss having good, healthy muscle tone, which I've lost now, after four months of an entirely sedentary lifestyle (not by choice, obviously). All of that is somewhat triggering as well, but I'm trying to just pick my battles for the moment, and to trust God, even when I feel like a tantruming toddler spiritually. I am having a really, really hard time with this... becoming somewhat disabled AND having to restrict my diet for entirely other reasons now, have honestly turned my world around.

Unfortunately, I am neither experiencing relief nor finding any answers. This morning I went for an oral glucose tolerance test, to see if my blood glucose and/or insulin behave abnormally under those conditions (even though my blood glucose readings are normally fine). I kinda forced my doctor into letting me do it. He's not concerned about impaired glucose tolerance (i.e. silent prediabetes), but I am - it actually worried me for months during my ED, due to my erratic lows and highs. Still waiting for those results (will hopefully still hear today). I also have a prescription to go back onto my old meds, which are used both for mood and pain management. Haven't started yet though.

How are you doing? Are you off your meds now, and how are your aches and pains?

Please keep praying for me. I feel like I am not being faithful through this trial... my question is just 'why'. Yes, my ED was an idol, but it was also something that brought awful suffering into my life at all levels. Why, now that I have sought healing, repentance and grace, am I suffering more than I ever have in my life? I know I need to trust, but it's just so difficult, and I easily fall into despair.

Looking forward to hearing from you, and thank you so much for your encouragement and prayers!

AnjaOak <3

lovetowrite81
Anjaoak

Hi Anjaoak,

It's good to hear from you! That's super weird, I wonder what's going on with the forums- why posts are disappearing & we can't post new threads. Odd.

I'm so sorry you have been having a difficult week, that you have been in so much pain. I can totally understand why are you feeling so discouraged- with so many limitations affecting your lifestyle right now. I know it seems like there is no light at the end of the tunnel. I just want to encourage you to cling onto hope in whatever way you can-- because with God, anything is possible. And even if He doesn't take away the pain, He sees you. He knows your heart and cares for you. That always gives me comfort in certain struggles, trying to rest knowing that I can't fix the circumstance but I can invite God in and experience His presence in the midst. It is so hard to trust in the midst of suffering, especially when we can't understand why we are in the place we are at or why we have to go through this specific trial. I've been learning a lot about asking different questions: instead of how do I get rid of this pain and suffering, asking myself 'Where is God in this pain and suffering, what is He speaking to me here, what purpose does He have for me in this season' even when I'm hurting.

Let me know when you get the results of your glucose tolerance test! I'm so sorry there hasn't been more answers or relief.

I am doing okay, thank you for asking- I am completely off medications and am not experiencing any aches or pains which I am grateful for. We will see if they start up again in the future when the anxiety builds up which it surely will without meds. I have been experiencing some depression- I've just been so sad, down, empty. Which I have been going through for a while. It's hard to feel connected with God or others or find meaning in anything when I just feel so numb and dissociated all the time. It's been hard. I'm struggling with a lot of negative self-talk at work and being hard on myself due to my extreme perfectionism. So that's been difficult. I've just been so drained and mentally exhausted. I just don't feel like I'm doing anything well or being helpful to anyone recently- I work at a day program for individuals with mental illness/substance use issues.

Anyways, I wish I had more answers or insight. But I can offer prayer & I will definitely be praying for you to find some rest and peace in the Lord, as well as some relief and wisdom with how to proceed from here. Hope to hear from you again soon- keep me posted on how you're doing <3

AnjaOak
Lovetowrite81

Hi there, Thanks again for posting your testimony. You really have been an enormous encouragement to many of us. I'm sure it must've felt so freeing to be able to talk about your story, having come out 'the other side' (even though it's an intricate web that constantly needs to be dealt with in some way). Thank you, also, for your encouraging words here. I am doing my best to just trust, and thinking back to other times when I've felt hopelessness and despair, and God has shown himself to be faithful and trustworthy at the end of the trial. It just really gets to me when I begin to consider that maybe, this time, the source of suffering won't be taken away, and I'll need to trust him for the rest of my life, regardless. That really shakes me. I so badly want this to end... and to feel like I'll have a 'normal' life again at some stage. Re the glucose tolerance test: So, the results were all perfect. However, they were meant to test my insulin levels along with the glucose after the test, but they only took my fasting insulin reading, which is very annoying. The idea was not only to check my glucose, but also my insulin secretion, to see if there were any imbalances. Very frustrating, but oh well. My doctor keeps insisting that I'm barking up the wrong tree, and that I should let it go. Tomorrow I'm seeing a vascular specialist, to see if there is anything wrong with my micro-circulation (which would affect the nerves). I'm really hoping that they'll find something... One anomaly with my neuropathy is that it's best at night and when I'm lying down (worst when sitting, or standing for long periods) - which is apparently atypical. Makes me think that the circulation hypothesis might be viable. But we'll see. They'll need to do biopsies etc for that, so I doubt I'll be getting an answer tomorrow already. I'm sorry that you've been feeling down and detached... Do you have any close support relationships (family, friends)? Someone who can pray with you? And I do understand about the perfectionism... I am very much the same, and have really been unkind to myself in terms of expectations. I'm glad you're working with a counsellor though. That's so important. And these patterns and ways of thinking are so deeply ingrained in us... it takes a lot of work and determination to overcome them. I really appreciate every kind word and prayer - I need prayer now more than ever. I sometimes feel like I'm having a crisis of faith... I have moments where I don't even want to draw near to God, out of sheer anger and despair. But I know He is ultimately where my hope is found. Hope you have a better week. There is so much to be thankful for. <3 AnjaOak xx

chunkymonkey68
I Totally Hate Feeling Pain During Exercise

I exercise to feel better and ironically begin to physically feel worse as I exercise more to relax after a long day at work or after grocery shopping in running the house. I just walk to take a mental break. But in exercising I do feel pain in my thighs and ankles. Neck and lower back too. isnt that just terrible.....?

AnjaOak
Me too!

Hi there,

I know your post is from a while back. How are you? I am three months into recovery and am going through the exact same thing (from about two weeks in). I also had orthorexia for four years. Desperate for solutions. Please get in touch...

ozymandias
I have!

Hi AnjaOak, I'm recently and semi-successfully in recovery for anorexia. For the last couple months and much worse the last few weeks I have had horrible pain in my legs, bones, and joints, especially my knees, that makes it difficult to move. I don't know if this is ED related or similar to what you have expereinced. I am going to try to get a bone density scan soon. I hope you can figure out what's causing your pain and that recovery gets easier for you.

AnjaOak
ozymandias

Hi Ozymandias! Thanks for your reply! Sorry to hear that you've also been struggling with these weird pains. :( Can you tell me, does yours feel like a specifically muscular/joint pain (like inflammation), or is it also a nerve pain (burning/crawling/stabbing under the skin)? Also, did it start during recovery, or already before that? If during recovery, how long did it take to appear? Man, it really sucks. I still don't have a cause for mine, but it seems it may be autoimmune, or linked to some kind of gut issue. The current hypothesis is that during recovery, my gut couldn't tolerate the sudden and influx of foods it wasn't used to eating in those quantities. It is even possible that I've developed permanent intolerances to certain food groups, which I now (ironically) have to avoid. It's heartbreaking, and nothing seems to help.

Littlestj
Pain during recovery

Hi AnjaOak,

How are you feeling now? It has been about 8 months since your last posting,I am hoping that you are feeling better now. Any sharing would be appropriated. My daughter is experiencing the same pain.

AnjaOak
Littlestj

Hi!

I'm so glad I popped over to check the forums. I'm so sorry about your daughter! Could you please tell me more about what happened?

I'm still trying to figure out the cause of my symptoms. I can say that at the moment, things are feeling slightly better, but the symptoms constantly fluctuate. I tried 9 months of a hardcore allergen-free diet, as I thought it might be an immune response. Nothing helped. I have been for extensive testing, even at an academic hospital. Nothing has been found that could explain my problems. I do know that being on a drip at hospital (for other issues) seemed to help immensely. I'm now wondering if it isn't some kind of electrolyte or other biochemical imbalance, or something. But I'm coping. To be honest, I've stopped worrying about it as of recently, as I can't do anything to improve or control the situation.

If you could let me know how this all started with your daughter, what her exact symptoms are, etc., I'd really appreciate that... If you get in touch via email, we can maybe dig a little deeper to try and find other commonalities that could lead us to an answer.

_admin_moderator
AnjaOak

Dear AnjaOak, We would like to let you know that we needed to delete the email address your shared. As per our community guidelines, sharing personal information is not allowed on the forums. You can see our guidelines here: https://www.nationaleatingdisorders.org/forums/community-guidelines. Thank you for your understanding and please keep posting! 

blue.butterfly
AnjaOak, I can't believe I

AnjaOak, I can't believe I have finally found someone with my same symptoms. Have you gotten better? This has been a year+ battle with this pain and I have been to over 20 doctors without finding any relief.

blue.butterfly
Wow, sorry for replying so

Wow, sorry for replying so late! But I am so glad we can relate to one another. You are not alone. In no way have I given up hope that we can heal 100% if it's God's will. I have nearly been suicidal over this but God has pulled me out of the pit of despair and I am carrying on. I too have experienced days where I felt "better", not completely normal, but far better than other days. I have the burning and stinging in my feet and sometimes my ankles feel like they are being pulled funny. At times my entire legs feel sort of heavy, hot, and weak. The symptoms can change from hour to hour. It's very odd. I wish there were a way to PM/email you to keep in touch.

_admin_moderator
Resources

Here are resources to reach out to if anyone on the forums needs to reach out for support:  

tristav1
Could my problems be to do with an ED?

Hi AnjaOak & FaithAndLove I came across your post after years of trawling through the web and various different doctors appointment. I feel that I may have an ED. This post has made me think that there could be a link between my eating habts and the pains in my legs. I have had issues since 2016. Pains in my legs randomly when running/walking down stairs. In my front/sides of my thigh muscles and sometimes into my calves. They sort of tense and lock up giving me pain. Starts in one leg and quite quickly moves to the other. Can take a few days for it to die down. I do plenty of exercise and eat really well in the week, only very slightly restrictive. When it comes to the weekend. I start eating some treaty type items and then thats it..... X calories later....in one day. I maintain my weight due to the exercise I do. With your post its making me think my leg pains could be linked to that. A lot of times it will occur after a long binge. Not instantly though, so I havent put 2 and 2 together before. The doctors have done lots of test - All fine. Gastrocopy showed signs of Gluten sensitivity, but not Celiac (Although this runs in the family). So I have been on a diet for 3 months, but im still getting issues. Although I know it takes time to be clear of Gluten and body to be recovered Awaiting results on more blood tests But maybe, just maybe it could be linked to an ED. Any thoughts would be appreciated Thank you

Hope_always
neuropathy

Did you find anything out from your blood test results? or have you noticed anything from going gluten free at all?

julesthefox
We don’t promote specific

We don’t promote specific diets or dietary changes as that can be triggering to many. I hope you are seeing a nutritionist so you can go about this is a safe way that won’t reawaken the eating disorder. Best of luck

_admin_moderator
Medical Signs and Symptoms

Since there is mention of pain in lower legs it might be a sign of a medical emergency so for precaution so other forum members are aware we are posting these symptoms. The following are just some of the signs of a serious problem that demands immediate medical attention:• accidentally or deliberately caused themselves a physical injury• become suicidal• confused thinking and is not making any sense• delusions (false beliefs) or hallucinations (experiencing things that aren’t there)• disoriented; doesn’t know what day it is, where they are or who they are• vomiting several times a day or has uncontrollable vomiting or diarrhea• experiencing dizziness or fainting spells• too weak to walk or collapses• painful muscle spasms• experience pain in the lower legs • complaining of chest pain or having trouble breathing• blood in their bowel movements, urine or vomit• a body mass index (BMI) of less than 16• an irregular heartbeat, and fast heartbeat, or very low heart beat (less than 50 beats per minute)• cold or clammy skin indicating a low body temperature or has a body temperature ofless than 35 degrees Celsius/95 degrees Fahrenheit• experience dizziness, nausea, fever• wounds/cuts heal slowly• feel tingling in the hands or feet• blurred visionOr for any other medical concerns. If you experience any of the above, we highly recommend seeking help from a medical professional as soon as possible. Seek medical help soon on an outpatient basis if you:• have significant heartburn and/or a burning sensation after eating• have other gastrointestinal concerns• have high blood pressure• struggle with significant joint or muscle pain• have difficulty sleeping (falling and/or remaining asleep)• struggle with fatigue, sudden weight gain, and/or hair loss• have frequent urination or unquenchable thirst• have gained and lost significant weight repeatedly• have gained significant weight in a short period of time• struggle with chronic diarrhea or constipation