Chronic Pain... How to Cope?

[suffering_mo_7]

I'm here mostly because of my chronic pain and the strange health symptoms I have experienced over the last several months due to getting an infusion. I can't even lay in my sick bed to just get relief. Pins and needles/, burning all over my body, sound sensitivity/tinnitus, gastric issues and insomnia plus more. I'm losing everything. I'm so depressed. I can't take it any longer

Anyone else in the same boat? How are you coping?

 

[LaughingGoat]

I can't relate personally, but are you on pain medication?

 

[Blurry_Buildings]

In chronic pain as well. I don't really have a way of coping, but interested to see if anyone does.

 

[suffering_mo_7]

I can't relate personally, but are you on pain medication?

No because they wouldn't help with the neuropathic burning and would be worse for my ears. I refuse to take any more medications... they cause me problems plus my stomach can't handle.

In chronic pain as well. I don't really have a way of coping, but interested to see if anyone does.

I'm sorry for your pain. I have numerous types and it's terrible. I'm only in my 40s and never anticipated this.

 

[LaughingGoat]

No because they wouldn't help with the neuropathic burning and would be worse for my ears. I refuse to take any more medications... they cause me problems plus my stomach can't handle.

That's a rough situation, tough to imagine trying to deal with that.

 

[Rev346]

Chronic thoracic muscle pain and strains here. I drank a lot of alcohol. Now on cymbalta and muscle relaxers every day. Tried to get off cymbalta about 10 years ago and made it about 8 months but pain got worse and I spiraled into horrible depression. Now back on cymbals for the rest of my f****ng life. So now I take cymbalta, muscle relaxers, probably drink too much alcohol, and use cannabis. I hate that I have to live dependent on prescriptions which is part of the reason I'm here. Some days I wish I went through with CTB back then. I had a secret stash of pills (opiates, ambien, flexaril, and something else) that I gathered from my prescription s and stole from other people. but the probably wouldn't have worked. Also had like sulfur for the h2s method. There were some dAys at work that I was tempted to print out warning signs for my car in the event I did go through.

 

[buoy]

This is stupid and irresponsible but I'm curious; have you tried drugs? Or medical weed at least? Cannibas helps with nausea

 

[iloverachel]

I am so sorry my friend
I don't have chronic pain myself but i have a few friends that do and its pure hell
I heard getting relaxing massages, hydrotherapy, carnivore diet, certain growth hormone injections may help ease the pain

 

[divinemistress36]

I use to have it really bad no it only bad with the bad weather. Craniosacral therapy over time helped a lot

 

[Callie Arcale]

Chronic pain sufferer for over a decade here :-( The past 3 years absolutely unbearable. I honestly don't know how I am still alive.

I am now taking LDN. I tried it last year but had to quit due to side effects. It's going much better this time. The pain has ben dialed down.

But you know after so many years with pain, I can't even enjoy the effects of LDN. I am very damaged by the torture I have endured, so I keep expecting the pain to overwhelm me any second.


I'm sorry you have all these health issues :-(

 

[lebrodude]

I don't have the body issues that you have but I do have tinnitus which is worsening I now have a chronic pain in my ear which is likely hyperacusis so that's wonderful.

I'm sorry you are suffering.

 

[Callie Arcale]

This is stupid and irresponsible but I'm curious; have you tried drugs? Or medical weed at least? Cannibas helps with nausea

It is not stupid at all. I know people who've had great pain relief from cannabis. I do not tolerate it, sadly.

 

[suffering_mo_7]

This is stupid and irresponsible but I'm curious; have you tried drugs? Or medical weed at least? Cannibas helps with nausea

I would but I am extremely sensitive to chemicals and medications and I have had akathisia before so have to be very cautious.

I don't have the body issues that you have but I do have tinnitus which is worsening I now have a chronic pain in my ear which is likely hyperacusis so that's wonderful.

I'm sorry you are suffering.

I'm sorry. My tinnitus is worsening also and hyperacusis. They both can be just awful.

It is not stupid at all. I know people who've had great pain relief from cannabis. I do not tolerate it, sadly.

What type of reaction do you get?

Chronic pain sufferer for over a decade here :-( The past 3 years absolutely unbearable. I honestly don't know how I am still alive.

I am now taking LDN. I tried it last year but had to quit due to side effects. It's going much better this time. The pain has ben dialed down.

But you know after so many years with pain, I can't even enjoy the effects of LDN. I am very damaged by the torture I have endured, so I keep expecting the pain to overwhelm me any second.


I'm sorry you have all these health issues

I'm sorry you are suffering also but am impressed that the LDN is helping. What type of pain, if you don't mind sharing?

I get such bad side effects from medications and supplements....,very sensitive, and with my stomach issues to boot. So now I am just terrified try anything. I never expected something like this from a medical infusion I was sold as safe. It was toxic.

 

[persimmon]

Have been in pain daily for 35 years. Have read a lot of pain science in that time and tried a ton of different remedies, cures, quacks and Hail Marys. One thing I've learned is that every case is unique. The experience of pain is biopsychosocial by its nature and no two people will react exactly the same to any kind of remedy or coping strategy. Only advice I would give is try and keep an open mind and keep on trying different things, see what works for you.

Huge sympathy to everyone on this thread of course – solidarity from a fellow sufferer.

 

[Callie Arcale]

I don't have the body issues that you have but I do have tinnitus which is worsening I now have a chronic pain in my ear which is

I would but I am extremely sensitive to chemicals and medications and I have had akathisia before so have to be very cautious.

I'm sorry. My tinnitus is worsening also and hyperacusis. They both can be just awful.

What type of reaction do you get?

I'm sorry you are suffering also but am impressed that the LDN is helping. What type of pain, if you don't mind sharing?

I get such bad side effects from medications and supplements....,very sensitive, and with my stomach issues to boot. So now I am just terrified try anything. I never expected something like this from a medical infusion I was sold as safe. It was toxic.

Burning type of pain in all my muscles, although worst in my legs and arms. It is generalized and constant. It's as if my muscles are on fire all the time. LDN takes the edge off, it's no cure and I still have pain 24/7.

I also react strongly to meds and supplements. I have MCAS so my body is very sensitive to everything.

Akathisia is a nightmare. Good that you got rid of it! It's one of my biggest fears. I've had RLS but it resolved.

 

[suffering_mo_7]

Have been in pain daily for 35 years. Have read a lot of pain science in that time and tried a ton of different remedies, cures, quacks and Hail Marys. One thing I've learned is that every case is unique. The experience of pain is biopsychosocial by its nature and no two people will react exactly the same to any kind of remedy or coping strategy. Only advice I would give is try and keep an open mind and keep on trying different things, see what works for you.

Huge sympathy to everyone on this thread of course – solidarity from a fellow sufferer.

I'm sorry you are suffering. Did you join because you are finally at your wits end? I'm middle aged and can't imagine doing this for another 30 years or more.

Burning type of pain in all my muscles, although worst in my legs and arms. It is generalized and constant. It's as if my muscles are on fire all the time. LDN takes the edge off, it's no cure and I still have pain 24/7.

I also react strongly to meds and supplements. I have MCAS so my body is very sensitive to everything.

Akathisia is a nightmare. Good that you got rid of it! It's one of my biggest fears. I've had RLS but it resolved.

How did you get diagnosed with MCAS? I see you have been on here a while... what keeps you hanging on? My beautiful life, though difficult, has been stolen from me and my family. I don't want to die, I just want the pain and suffering to end... yet I am scared because I know it can be worse.

 

[Need2Leave]

I suffer from Sinusitis headaches or severe tension headache pain and tinnitus. I can't really cope. Taking anything for the headache is counter productive and will make my already catastrophic tinnitus worse. I think I understand what you're going through.

 

[Aprilfarewell4]

I can't cope that's why I'm killing myself, my pain is different than yours though. Some of the suggestions on here can maybe actually help you

 

[Callie Arcale]

How did you get diagnosed with MCAS? I see you have been on here a while... what keeps you hanging on? My beautiful life, though difficult, has been stolen from me and my family. I don't want to die, I just want the pain and suffering to end... yet I am scared because I know it can be worse.

I have a complex, multi-systemic disease called ME/CFS and MCAS is a common co-morbidity. The specialist who diagnosed me with ME/CFS also diagnosed my MCAS.

I am sorry your life has been stolen by illness. Only those of us who are chronically ill can understand the grief, the loss, the endless torment. In your original post you said your problems were caused by an infusion, that sounds just awful. Are you getting proper care? Was it an allergy type reaction?


My disease is post viral, autoimmune and neurological, which basically means I got a harmless virus which pushed my immune system into overdrive and it's been attacking my body ever since.

I don't cope at all, that's why I am here. I lost my career, my job, all my hobbies, all my friends (as I cannot interact socially), everything that was me. It's a living nightmare with no end.

I keep hoping there will be a medical breakthrough, I've been hoping for 14 years. Most days all I see is darkness and despair. But I am not ready to die because I have people who love me so, so much and also because I have a huge desire to walk one more time in the forest, and to swim one more time in the sea, before I draw my last breath.

I understand you are scared. Yes, it can get worse, but it can also get better. It's a matter of luck.

 

[persimmon]

I'm sorry you are suffering. Did you join because you are finally at your wits end? I'm middle aged and can't imagine doing this for another 30 years or more.

I was living pretty tolerable life until last October when things got worse to the point where I am largely housebound, largely bedbound. I've come through bad periods in the past of severe limited mobility but this feels like one mountain too far.

 

[suffering_mo_7]

I can't cope that's why I'm killing myself, my pain is different than yours though. Some of the suggestions on here can maybe actually help you

I didn't divulge everything.

I have a complex, multi-systemic disease called ME/CFS and MCAS is a common co-morbidity. The specialist who diagnosed me with ME/CFS also diagnosed my MCAS.

I am sorry your life has been stolen by illness. Only those of us who are chronically ill can understand the grief, the loss, the endless torment. In your original post you said your problems were caused by an infusion, that sounds just awful. Are you getting proper care? Was it an allergy type reaction?


My disease is post viral, autoimmune and neurological, which basically means I got a harmless virus which pushed my immune system into overdrive and it's been attacking my body ever since.

I don't cope at all, that's why I am here. I lost my career, my job, all my hobbies, all my friends (as I cannot interact socially), everything that was me. It's a living nightmare with no end.

I keep hoping there will be a medical breakthrough, I've been hoping for 14 years. Most days all I see is darkness and despair. But I am not ready to die because I have people who love me so, so much and also because I have a huge desire to walk one more time in the forest, and to swim one more time in the sea, before I draw my last breath.

I understand you are scared. Yes, it can get worse, but it can also get better. It's a matter of luck.

Once I get PMs, can I PM you?

I was living pretty tolerable life until last October when things got worse to the point where I am largely housebound, largely bedbound. I've come through bad periods in the past of severe limited mobility but this feels like one mountain too far.

I'm so so sorry and can empathize. My pain is such that laying in bed only makes it worse and I don't feel like a human being. With the hyperacusis/sound sensitivity getting worse for me, I am not sure I am going to be able to stay in my home with my family. I'm terrified because most things just continue to get worse.

 

[Callie Arcale]

Once I get PMs, can I PM you?

I don't do PM, due to a bad experience with a member of the forum way back when I was new to SS and very naive. I found out the hard way that privacy is paramount around here. You never know who's a wolf in sheep's clothing.

But I am happy to talk to you in this thread, if you want @suffering_mo_7

I was living pretty tolerable life until last October when things got worse to the point where I am largely housebound, largely bedbound. I've come through bad periods in the past of severe limited mobility but this feels like one mountain too far.

I can relate to that @persimmon . It's like living in a prison, isn't it? What is the cause of your problems, if you don't mind sharing?

When I was mainly homebound but still able to move around the house freely, life was bearable, I even had nice days, I could cook, take care of my flowers, sit in the armchair.

But since becoming 95-99% bedbound my life quality has gone down to almost zero. I still have enough mobility to walk aprox 20 meters a few times a day, I can fetch food from the kitchen for instance.

I guess once I become 100% bedbound, I will ctb.

 

[DEATH IS FREEDOM]

I have chronic pain and I have to use painkillers which cause side effects. It is just meaningless suffering. I am preparing for death which is the only solution.

 

[suffering_mo_7]

I don't do PM, due to a bad experience with a member of the forum way back when I was new to SS and very naive. I found out the hard way that privacy is paramount around here. You never know who's a wolf in sheep's clothing.

But I am happy to talk to you in this thread, if you want @suffering_mo_7


I can relate to that @persimmon . It's like living in a prison, isn't it? What is the cause of your problems, if you don't mind sharing?

When I was mainly homebound but still able to move around the house freely, life was bearable, I even had nice days, I could cook, take care of my flowers, sit in the armchair.

But since becoming 95-99% bedbound my life quality has gone down to almost zero. I still have enough mobility to walk aprox 20 meters a few times a day, I can fetch food from the kitchen for instance.

I guess once I become 100% bedbound, I will ctb.

Thank you for that advice, @Callie Arcale...a good reminder. I think I am just so desperate to connect with those suffering intensely and trying to understand how they can live with it. Akathisia is terrible and even though I don't think I have it full blown, I still struggle to stay still...the burning nerve and skin pain makes that even more difficult. I can't watch TV even.

I have chronic pain and I have to use painkillers which cause side effects. It is just meaningless suffering. I am preparing for death which is the only solution.

I am so sorry you are suffering. Side effects are horrible and often worse than the original condition.

 

[persimmon]

I don't do PM, due to a bad experience with a member of the forum way back when I was new to SS and very naive. I found out the hard way that privacy is paramount around here. You never know who's a wolf in sheep's clothing.

But I am happy to talk to you in this thread, if you want @suffering_mo_7


I can relate to that @persimmon . It's like living in a prison, isn't it? What is the cause of your problems, if you don't mind sharing?

When I was mainly homebound but still able to move around the house freely, life was bearable, I even had nice days, I could cook, take care of my flowers, sit in the armchair.

But since becoming 95-99% bedbound my life quality has gone down to almost zero. I still have enough mobility to walk aprox 20 meters a few times a day, I can fetch food from the kitchen for instance.

I guess once I become 100% bedbound, I will ctb.

That does sound grim, Callie. My problem was only diagnosed this year as a type of arthritis though as there is no active inflammation there are no drugs for it. They don't know exactly what's causing the amount of pain I have.

 

[suffering_mo_7]

That does sound grim, Callie. My problem was only diagnosed this year as a type of arthritis though as there is no active inflammation there are no drugs for it. They don't know exactly what's causing the amount of pain I have.

Do you all mind sharing your age range? I'm in my 40s so a long way to go. Are you all able to distract from it and find any joy/laughter in life? I can't enjoy food because of my stomach, no hot showers because of my painful skin. No music because it's a bother to my ears. I'm too depressed and uncomfortable to even focus on TV. The faith I had, I am now questioning. There seems to be little to no comfort/solace.

What I have definitely seems to be neuropathic/neurological. In addition to pain, I feel uncomfortable in my skin and often just have to pace. I would rather be still. It is a nightmare I just can't seem to wake up from.

 

[lifeisbutadream]

Chronic pain sufferer for over a decade here :-( The past 3 years absolutely unbearable. I honestly don't know how I am still alive.

I am now taking LDN. I tried it last year but had to quit due to side effects. It's going much better this time. The pain has ben dialed down.

But you know after so many years with pain, I can't even enjoy the effects of LDN. I am very damaged by the torture I have endured, so I keep expecting the pain to overwhelm me any second.


I'm sorry you have all these health issues :-(

LDN = Low dose naltrexone?

I'm also here because of chronic pain. I did try LDN once briefly but it didn't do anything. I will try it again now.

 

[persimmon]

Do you all mind sharing your age range? I'm in my 40s so a long way to go. Are you all able to distract from it and find any joy/laughter in life? I can't enjoy food because of my stomach, no hot showers because of my painful skin. No music because it's a bother to my ears. I'm too depressed and uncomfortable to even focus on TV. The faith I had, I am now questioning. There seems to be little to no comfort/solace.

What I have definitely seems to be neuropathic/neurological. In addition to pain, I feel uncomfortable in my skin and often just have to pace. I would rather be still. It is a nightmare I just can't seem to wake up from.

I have quite a way to go before natural death. I can distract to some degree with TV, Internet and YouTube though using my laptop is clunky with voice recognition. Got out to a beer garden yesterday for a couple of hours when it was sunny – that was nice.

 

[Callie Arcale]

LDN = Low dose naltrexone?

I'm also here because of chronic pain. I did try LDN once briefly but it didn't do anything. I will try it again now.

Yes, Low dose naltrexone. Good luck!

Do you all mind sharing your age range? I'm in my 40s so a long way to go. Are you all able to distract from it and find any joy/laughter in life? I can't enjoy food because of my stomach, no hot showers because of my painful skin. No music because it's a bother to my ears. I'm too depressed and uncomfortable to even focus on TV. The faith I had, I am now questioning. There seems to be little to no comfort/solace.

What I have definitely seems to be neuropathic/neurological. In addition to pain, I feel uncomfortable in my skin and often just have to pace. I would rather be still. It is a nightmare I just can't seem to wake up from.

@suffering_mo_7

I am also in my 40s. I can watch a little tv a few times a week, without sound and low luminosity. I wear ear plugs 24/7 and even use ear muffs when there's lots of noise outside. But the ear muffs cause too much pain. I have noise, light and touch sensitivity. It's part of the neurological side of my diagnosis.

I can only take very brief showers twice a week sitting in a chair, I also cannot tolerate hot water or the pressure from the shower, so I turn the pressure to very low. I am happy that I can shower now. When I was sicker I could not do it at all. Nothing broke me as much as losing the ability to take care of myself. I dread - absolutely dread - the day my health will deteriorate again to that point.

I don't have the energy to listen to music, alas, it was such a huge part if my life before.

I really feel for you @suffering_mo_7 I see you are in so much pain

 

[suffering_mo_7]

I suffer from Sinusitis headaches or severe tension headache pain and tinnitus. I can't really cope. Taking anything for the headache is counter productive and will make my already catastrophic tinnitus worse. I think I understand what you're going through.

I'm sorry. I have had chronic daily headaches before and they are awful. As can be tinnitus. It's especially hard when you can't treat your ailments because of other issues. That's where I am at and feeling trapped.

I have quite a way to go before natural death. I can distract to some degree with TV, Internet and YouTube though using my laptop is clunky with voice recognition. Got out to a beer garden yesterday for a couple of hours when it was sunny – that was nice.

A beer garden.... that sounds good.