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Beyond Medication


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Hi, I am new to this board but I thought it might be worthwhile to discuss whats we can do to manage CH beyond Meds.


I have been a CH suffer since I was 6, I am now 34 and have a myriad of social and depressive issues with regards to CH.

To begin, CH is rated as one of the most painful medical condition you can get my specialist told me that CH is considered a 10 on the pain scale while medication and management for the pain exists it's not without its side effects and issues.


Depression is common, I have been managing this with regular exercise, I was offered "happy" meds by my doctor which I declined and chose a more proven route of combating depression which is 4 times a week at a local gym, exercise has show to be fantastic as counteracting depression as are hobbies/sports.


Social Isolation, CH hurts we care about others and dont want to hurt them by seeing us hurt so we hide, Isolation has recently even been recognised as a symptom of CH as its mostly universal, I dont have a good strategy for this, I have recently been spending time in my local library to get used to people again.


Employment: Big issue, CH is misunderstood and scorned (well in NZ currently) I have been told to "just take a few panadol" which may as well be tic tacs (a candy here) currently I am being paid to "Blog" write stories for company's websites from home. 


Right now I am having an issue with Heightened pain tolerance, which is both good and bad.. its good because it hurts less, it's bad because I can accidentally hurt myself and not notice, would love to hear other's issues and what they have found or need help with finding solutions for.


We all suffer but we can suffer together.

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Thanks for the post Leonhart. I'm struggling with all the issues you've mentioned. I have multiple sclerosis and ch. I have a lot of fatigue with the ms already and when I'm in a ch cycle, I'm barely moving. It's like my life just has to be put on hold. Currently, im exactly 60 days into a cycle. My husband is incredibly supportive but I can feel his sadness wanting his playmate back. I'm on an antidepressant and before this cycle started, a regular at the gym. Working out helps with ms symptoms. However, now, working out is a huge ch trigger. I also take tecfidera for my ms so I'm not a candidate for busting. As far as social isolation, I used to completely with draw from friends but now I let them know what I'm going through and that I will be back as soon as I can. All my good friend totally get it and they just check in with a call or text once a week which is all I really want when I feel this way. It's been important mentally for me to just let those I care about know what's up. I think before when I just disappeared, they thought it had something to do with them and not me. Now, they know I love them and wish I could be more social but I just have some shit to do, but I'll be back. I feel less isolated and more excited to be done with this cycle so I can get caught up on their lives. Jobs are a real struggle. In my thirties, I was a self employed artist. I had a decorative finish and mural business along with an art gallery. I was busy as hell but when I went into a cycle I could tone down my work load. I also seemed to only get ch at night so I was just tired all day but could keep going. The recession in 2008 clobbered my businesses so I went back to school to get my degree in psychology with the hopes of becoming an art therapist. My Junior year I came down with ms and was diagnosed officially just after graduation. Classic, life happens while your making other plans. I'm grateful for my degree because it's actually kept and keeps me relatively sane even if I not able to use it. Anyway, just wanted you to know that I feel your pain. It's helpful to hear that others struggle and we're not alone out there. The only advice I can give is to be honest and share with your friends. Let them know you're not looking for a pity party, you just might not be able to join them as much as you would like, but to keep you in the loop. Good wishes

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