I speak for pain campaign

I speak for pain. I do. The whole purpose of this blog (aside from the occasional general musings and rantings on life) is to give a voice to chronic pain. It began three years ago because I was frustrated and needed to find a less physical outlet for my energy and now, instead of using the blog to find a life less physical, the blog has become that life.

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But not everyone wants to put their every pain related thought in writing, so I speak for my pain and I speak for others. I speak, shout, cry and rant about pain, and I like to think that most of the time, I do an okay job of it.

The thing I’m not very good at is using that voice to challenge the medical system we seem to be stuck in. I don’t challenge my GP who dismisses me with antidepressants, I don’t challenge the gender stereotypes that leave female chronic pain patients feeling helpless and ignored, and I don’t challenge the lack of medical research in this area. So that’s what I’m going to change; I’m going to use this loud mouth to be a bit more effective than just jabbering away on the internet.

You can imagine my delight when The National Fibromyalgia and Chronic Pain Association announced the new campaign – #ISpeakForPain. It aims to set a national pain strategy in the US by challenging policy and showcasing the millions of people who are effected by chronic pain every day. The campaign introduction says:“People making decisions that significantly affect your quality of life (federal officials, legislators and policy makers) need to hear from you. Joining the #ISpeakForPain [campain] and telling your story can affect policy decisions and new areas of research.”

Chronic pain patients and their families can participate by uploading photos to #ISpeakForPain on Twitter and Facebook. So come on, cameras out. Stupid faces, heart-felt signs or your serious fight face (yes, that’s what I’ve gone for), it’s selfie time. This is me. I speak for pain.

American readers, here’s looking at you to take it one step further. You can browse the website to write a letter to your Member of Congress – with your own content, or using a prepared template – and you can sign this White House petition on 13 July.

And whilst I’m on the subject, I want to say that whilst I speak for pain, you’re the ones listening. So thank you.

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16 thoughts on “I speak for pain campaign

  1. Hi i live in Ireland. I have fibromyalgia. Please let me know what happens on the 7th of July.

    Thanks,
    Mary.

      1. Ah! I see – thanks for helping! That just means the tag is “pain campaign” and all those tags were posted on July 7th. Sorry for the confusion – that’s wordpress for you!

  2. Thank you!
    Ispeakforpain and will help the fight. Will definitely do this and share!,
    Since 17yrs old Ive been in chronic pain.
    Im 40. I live in FL where politicians have made our difficult lives even more of a struggle by making it almost impossible to get required meds.
    I have:
    Fibro
    Myofascial pain syndrome
    Interstitial Cystitis
    DDD
    Scheurmanns disease
    TMJ
    Migraines
    IBS
    Endometriosis
    Thyroid disease

    I know pain.
    Im blessed to have a wonderful, compassionate, brilliant pain mgt dr but govt officials are doing everything to block real legit good drs from prescribing pain meds.
    I lost my pharmacy of 18 yrs. Have had 5 in 2 yrs. Now they are not only not filling some pain med scripts some are flagging pain mgt drs all together. The 1 pharmacy that is helping and has pain mgt program and is trying to fight the good fight can not get enough meds in stock. I am left w/never knowing day to day if I will have medicine tomorrow. I get partial fills. Sometimes a weeks worth, sometimes 2 days worth. I am on time release opiate and instant release. I can’t just stop either cold turkey and experience not only pain but withdrawals as of course I am physically dependent after years on meds. This has become more devastating then the debilitating illnesses themselves.
    I have attempted to fight and help but get overwhelmed. I plan to write to my paper and politicians. A writer from local paper that is a highly awarded well known newspaper asked to write an article about me during Rick Scott’s (our ignorant governer) attack on pain mgt. I was too sick at the time with no pharmacy and possibly loosing my only dr as they tried to take her license away. I hope to be able to do this asap and help more.

    Thank you for what you do. I have tried to begin a blog many times but pain didn’t allow me to type etc. Its a lot, bravo! 😉

    1. Hi there, thanks so much for your comment. It’s often the little things that get to us and before we know it, it all gets too much. Good luck with speaking to the paper – that sounds fab!

  3. Just found your blog via facebook, thank you some where and somebody too talk too. My four walls and a radio keep me company 5days aweek. If it wasn,t for my craftwork i would be in adark room with no light, so at last thank you again.

  4. Your initial blog touched me. I took pain meds for years then suddenly they were pulled from me and i was forced to stop cold turkey. That was 8 months ago. My doctor dropped me from her practice and I couldn’t even stay in the same clinic, or even the same group at a different local clinic! I was forced to find a new doctor, then had to convince that doctor to help me. She finally sent me to a pain clinic where finally, just yesterday, I was able to get pain meds. I have to drive an hour and a half once a month to get the script, plus if they call, at any time, I have to drive there for a pill count and a urine test. All I want to do is live my life. I had a gastric bypass to try to stay out of a wheelchair but it didn’t help with the pain. For the past couple months I broke down and started taking something that helps but I know is much more dangerous than opiates. 1000 MG each of acetaminophen, ibuprofen, and naproxen – all at the same time, three times a day. This helps a lot but I know probably severely shortens my lifespan. It’s a trade off, a shorter but better life… i hope. Now, even though I have some pain meds, they are not enough, I am afraid to completely stop the otc stuff because I fear pain. These people in Washington, I am convinced, do not understand, nor do they care, about what unrelived pain does to body, mind, and soul.

    1. Susan, I’m so sorry you have to go through this. I’ve been in a similar situation and am lucky to currently have better doctors then before.

      However, your current pain management regimen concerned me – I damaged my stomach by not following the instructions about eating with medication. You’re taking higher doses than I was, but it’s the naproxen that caught my attention – that’s what really damaged my stomach.

      Please be sure you eat before taking these medications. I know it’s tempting not to because they absorb more quickly on an empty stomach, but I paid the price for that – I can’t drink coffee or ANYTHING carbonated, I can never skip meals, and I sometimes have to be careful with spicy food if my stomach is acting up. And I haven’t taken anything with ibuprofen, naproxen, or aspirin in it for years.

      I also found that liver cleansing herbs helped with all the side effects of my medications, not just with my liver, but my stomach and bowel movements too. The one I take (Liver Blend SP-13 by Solaray) includes milk thistle, burdock, kelp, asparagus. It’s ~$8 for a 30-day supply. There are others you can find at The Vitamin Shoppe or online at VitaCost, that’s just the one I found that worked well for me.

      I know it’s different for everyone and I apologize if I sound like one of those advice-givers we chronic pain survivors hear from all the time, but if I could go back to my younger self and saved myself this additional stomach pain on top of my chronic pain, I would have.

    2. Susan, I’m so sorry I didn’t reply when you posted this. It somehow got lost in my notifications and I’ve only just seen it as Bontastic has replied to you. That does sound like an awful lot of medication – and the ibuprofen plus naproxen is not a good combination either. I don’t know why your doctor “dropped you” from her practice but that doesn’t sound like something that is okay. I hope that you have people around you who you can turn to for support. Also, I can’t recommend them personally, but I know of Pill Pack in the US who deliver meds to you so you don’t have to drive and collect. Perhaps they’re worth checking out? https://www.pillpack.com/

  5. Great blog 🙂 Every chronic pain blogger speaks for pain in their own, invaluable way. And don’t worry, I’ll stick it to the NHS on your behalf. I may even post my complaint online for all to read… 🙂
    Ren x

  6. I suffer from lower back pain.3 surgerys no change. For know iam only taking pills. What to figure out a solution. Like you say talking to Dr’s. Is like talking to the wall. My life change 360° I don’t do a lot of exercise but love to dance. I don’t dance any more that’ s a big thing that I lost in my life. And yes Dr’s change meds like no big deal . This has been going on for 4 years know. # I speak for pain.

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