Chronic Illnesses and Physical Diseases Megathread

[Rational man]

After 9 months of being with my GP, I think I've finally convinced her that my illness isn't "psychosomatic"

Have you considered alternative routes like Chinese medicine?
my experience of doctors makes me think their shit !

 

[FuCrpsPain]

CRPS in both legs/feet, bipolar (mostly depression), anxiety, PTSD, arthritis, back issues and GI problems.

I used to be able to mostly function in society before the CRPS. It's been over a decade and the pain has taken over my life. The hardest part about it is that it's mostly "invisible". Doctors can't agree on treatment and most think it's "all in your head". It took my doctor seeing me in a flare to realize that I have it because I don't have a lot of the visible symptoms unless I'm flaring. All I want is for the pain to stop. I don't want to stop breathing, I just want to be able to live without having to decide how much pain I can deal with each day. It would be wonderful to be able to cook dinner AND do the dishes in the same night. Or be able to walk the dog or anything other than be stuck in bed and not be able to be the mom to my kids I know they need. I'm so tired of pain

I read an article about how long term pain (physical, emotional or mental) changes the brain. I have noticed in the last 3 years the effects of how the pain has changed me. I'm more angry, irritable, tired but can't sleep, sleep too much, yelling more at the kiddos, isolating myself from family, totally removed all friends from my life.... Pain is debilitating. I feel like I'm trapped in my body, my brain wants to do things but the pain stops me.

 

[_Seeking]

CRPS in both legs/feet, bipolar (mostly depression), anxiety, PTSD, arthritis, back issues and GI problems.

I used to be able to mostly function in society before the CRPS. It's been over a decade and the pain has taken over my life. The hardest part about it is that it's mostly "invisible". Doctors can't agree on treatment and most think it's "all in your head". It took my doctor seeing me in a flare to realize that I have it because I don't have a lot of the visible symptoms unless I'm flaring. All I want is for the pain to stop. I don't want to stop breathing, I just want to be able to live without having to decide how much pain I can deal with each day. It would be wonderful to be able to cook dinner AND do the dishes in the same night. Or be able to walk the dog or anything other than be stuck in bed and not be able to be the mom to my kids I know they need. I'm so tired of pain

I read an article about how long term pain (physical, emotional or mental) changes the brain. I have noticed in the last 3 years the effects of how the pain has changed me. I'm more angry, irritable, tired but can't sleep, sleep too much, yelling more at the kiddos, isolating myself from family, totally removed all friends from my life.... Pain is debilitating. I feel like I'm trapped in my body, my brain wants to do things but the pain stops me.

I have CRPS in both legs too, it started with a knee injury 5 years ago and spread to the other knee, and then spread to ankle and now both hips. The only thing that helped to any degree was hyperbaric oxygen, but that's expensive and is only prolonging the inevitable. I'm sorry you have to live with this condition, it is hell.

 

[johnr]

I have constant pain from Transverse Myelitis. All the best to every one of us

CRPS in both legs/feet, bipolar (mostly depression), anxiety, PTSD, arthritis, back issues and GI problems.

I used to be able to mostly function in society before the CRPS. It's been over a decade and the pain has taken over my life. The hardest part about it is that it's mostly "invisible". Doctors can't agree on treatment and most think it's "all in your head". It took my doctor seeing me in a flare to realize that I have it because I don't have a lot of the visible symptoms unless I'm flaring. All I want is for the pain to stop. I don't want to stop breathing, I just want to be able to live without having to decide how much pain I can deal with each day. It would be wonderful to be able to cook dinner AND do the dishes in the same night. Or be able to walk the dog or anything other than be stuck in bed and not be able to be the mom to my kids I know they need. I'm so tired of pain

I read an article about how long term pain (physical, emotional or mental) changes the brain. I have noticed in the last 3 years the effects of how the pain has changed me. I'm more angry, irritable, tired but can't sleep, sleep too much, yelling more at the kiddos, isolating myself from family, totally removed all friends from my life.... Pain is debilitating. I feel like I'm trapped in my body, my brain wants to do things but the pain stops me.

I know how you feel. I've had constant pain for almost 18 years and I'm just different now. It's in my right hand and I can't even shoot a basketball or play table tennis. There are times when I wonder whether I'm just a hypochondriac

 

[Callie Arcale]

I agree. I frequently say that if I were a dog, they'd have put me down years ago. It is merciless and cruel to be forced to endure existing with physical torture that would be considered a war crime in a civilized society.

Same here

 

[Wrennie]

I'm just deteriorating slowly & agonizingly, and it shows in my reflection. It haunts me. There's no escape from this body that tortures me on such a profound level every day. As time passes, even more seems to go wrong with it.
I'm just grateful for all of the kind & empathetic souls on this website. Being surrounded by people that "get it" (where we aren't forced to censor our true feelings because our sentiments make the healthy & privileged folks "uncomfortable") really is one of the only things that enables me to hold on in the face of so much otherworldly pain. This place is an amazing support network in general & I'm very appreciative that this thread exists.

 

[FuCrpsPain]

I have CRPS in both legs too, it started with a knee injury 5 years ago and spread to the other knee, and then spread to ankle and now both hips. The only thing that helped to any degree was hyperbaric oxygen, but that's expensive and is only prolonging the inevitable. I'm sorry you have to live with this condition, it is hell.

I've heard that it can help some ppl. I have tried everything my insurance will pay for except for getting the implanted stimulator. I've had to fight to get my pain meds back after a year of it being taken away due to some stupid rules about drug testing and my insurance. I'm not wanting to put something inside my body, risk losing insurance and being stuck with something I can't afford to maintain without insurance. Mine started in my left foot after a surgery, spread to my right. Then 4 yrs ago I broke my right leg and it spread up both legs. It's to my thighs. It's taking everything away from me. I'm in pain all the time. My husband tries to be supportive but he doesn't understand how much it actually takes for me to get out of bed... I just want the pain to stop. But for that to happen I'd have to stop and I'm not ready to leave my family. I wish there was a switch or magic pill that would take the pain away. I've always had depression/mental pain, physical pain makes it all so much worse

 

[tgfm]

I wanted to share this for any who haven't seen or heard of it. Something like this could really change things in the not too distant future and give options to people for a reliable, humane, and peaceful death.

Sarco – Assisted Suicide Pod

 

[tryingtoescape]

I have not slept in days. The damaged tendon from my sprained ankle from 7 months ago is still keeping me from walking. I am under so much stress and fear and tension I can't even sleep with the strongest combination of sleep drugs. Seroquel, Klonopin, Lunesta, Benadryl, Melatonin, anything. It's morning now and I've been in bed for over 8 hours, wide awake. In the past 4 days, I've only slept a total of maybe 10 hours. I wake up one hour after sleeping and I can't get back to sleep.

I have tinnitus already, and this is even worse. I want to be able to walk so badly. My parents have to do everything for me. I complain all the time. Now I can't even walk and cook, and cleaning the house was relaxing for me. Walking is one of my favorite activities, I used to walk for hours before, it was one of the few things that relaxed me. I used to love to cook and clean the house. I haven't seen the fresh air and sunlight in weeks except to go to doctors appointments. The things I loved have been taken away from me one by one. My quality of life somehow has dropped lower. I am extremely afraid. Pro lifers put me into a rage. I feel extremely trapped. I'm 22 and have a constant ringing in my ears, and now I can't walk. I want to cry and cry. I want this to end.

I wish euthanasia was legal. I can't believe how cruel this world is. Even animals are treated better. I just want a peaceful death. I cannot live like this. I can't believe this has happened to me. I actually think it's a joke or a nightmare or I'm in hell sometimes. I can't believe this is real.

 

[tgfm]

I have not slept in days. The damaged tendon from my sprained ankle from 7 months ago is still keeping me from walking. I am under so much stress and fear and tension I can't even sleep with the strongest combination of sleep drugs. Seroquel, Klonopin, Lunesta, Benadryl, Melatonin, anything. It's morning now and I've been in bed for over 8 hours, wide awake. In the past 4 days, I've only slept a total of maybe 10 hours. I wake up one hour after sleeping and I can't get back to sleep.

I have tinnitus already, and this is even worse. I want to be able to walk so badly. My parents have to do everything for me. I complain all the time. Now I can't even walk and cook, and cleaning the house was relaxing for me. Walking is one of my favorite activities, I used to walk for hours before, it was one of the few things that relaxed me. I used to love to cook and clean the house. I haven't seen the fresh air and sunlight in weeks except to go to doctors appointments. The things I loved have been taken away from me one by one. My quality of life somehow has dropped lower. I am extremely afraid. Pro lifers put me into a rage. I feel extremely trapped. I'm 22 and have a constant ringing in my ears, and now I can't walk. I want to cry and cry. I want this to end.

I wish euthanasia was legal. I can't believe how cruel this world is. Even animals are treated better. I just want a peaceful death. I cannot live like this. I can't believe this has happened to me. I actually think it's a joke or a nightmare or I'm in hell sometimes. I can't believe this is real.

I can really empathize with you when it comes to losing the ability to walk. I used to go for long walks everyday. It was one of my favorite things to do. I'd even started hiking. Being alone on a long walk through the woods brought me so much peace and joy. Then little by little, day by day, walking became progressively more difficult. I had started to walk much slower and it became more and more uncoordinated. And then I had to give it up altogether. Illness is like a thief that robs you every day of a little bit more: of your freedom, your autonomy, your dignity, and your hope. It traps you in a body that has turned against you. I am so sorry for what you're going through. I really hope that, if nothing else, you can one day go back on your long walks again.

 

[pphelpme]

I can really empathize with you when it comes to losing the ability to walk. I used to go for long walks everyday. It was one of my favorite things to do. I'd even started hiking. Being alone on a long walk through the woods brought me so much peace and joy. Then little by little, day by day, walking became progressively more difficult. I had started to walk much slower and it became more and more uncoordinated. And then I had to give it up altogether. Illness is like a thief that robs you every day of a little bit more: of your freedom, your autonomy, your dignity, and your hope. It traps you in a body that has turned against you. I am so sorry for what you're going through. I really hope that, if nothing else, you can one day go back on your long walks again.

I can't go hiking anymore because I'm going blind. Is there anyone else on here who is going blind? That's why I want to cbt. Not only am I going blind I have PTSD, I am bipolar, I have generalized anxiety And panic attacks. There's no way I can handle going blind with all of those things. I already tried to kill myself once and I failed. I'm going to SN next time. And I have to hurry before my vision gets so bad that I can't pull it off.

 

[lifeisbutadream]

Neurological illness here (I wont go into detail) but a constant suffering/torture I can't cope with.

Same. Pain for years now. Difficulty walking now. No cure. Used to be an athlete.

I see people suffering from tinnitus tho and that is one i did beat in the past. First, a benzo drug allowed me to sleep, and then i began to think of it as my friend. The sounds in my ears that kept me awake at night i pretended that i was in a spaceship or a submarine and it was the sound of interstellar dust or water rushing by. Then eventually the brain adjusts to it and I didn't even notice it anymore...but if i think about it it's still there, so i mustnt talk about that anymore!

 

[PDAnnie2610]

I forgot to add that I've a spine issue - commonly known as slipped disc. I was reminded today during my annual consultation with the orthopaedic specialist when my MRI and X rays were reviewed after 10 year interval and I was told that my condition had worsened and that's why I've been having episodes of pain, resulting in referral to yet another specialist for pain management, this time. Should I be thankful that I now average about being in pain one week per year for the last 2 years? I'm tired, and I dunno how to tell my (new) psychiatrist my fatigue. Just plain tired of hospitals outpatient clinics and I've at least 3 more specialist doctors to see for this year and 2 to 3 allied health professionals to get help from.

And I burnt a friend who is tired and stressed from me. Specifically, my ex's mother.

I struggle to stick to ctb but the literal (and figurative) pain is killing me. I refuse to live a life like this.

Hyperacusis, Tinnitus, Gastritis, Gastro paresis, Depression, Anxiety, IBS-C,hashimotos hypothyroidism, lpr reflux, herniated discs, losing my hearing, double vision, fatigue, Anosmia, photophobia, pneumonitis, high heart rate, tmj, atn, so much more

did the replaying of songs start after the tinnitus or hyperacusis or before?

Herniated disc can be a bit*h. I hope you are coping well...

 

[tryingtoescape]

I am going crazy. I want to scream and scream. I can't believe this is real. The inability to walk and no improvements day after day are crushing my hopes. I want to walk again so badly. I need to get an mri but I can't even decide if I should or not because my tinnitus is already bad and if it worsens I'll be in more despair with the ankle and unable to sleep, which will further inhibit healing of the ankle. I don't think my doctor will say ok to another ultrasound. I'm also so mad that something so trivial caused the injury. If I just hadn't gone out that day. I can't believe any of this is real. It is so cruel and horrific to be kept alive like this. I feel so trapped.

 

[Soill]

,

I am severly sick for 3 years. Every seocond is torture and hell.. is suffrer from Depression and strange psychosomatic Sensations in my body since i was 13. 3 years ago and had a breakdown due to a bad reactions to an antidepressant and severe stress.. my brain is just Fried,
I suffer from:
Chronich Dissociation
Sever Depression Transmitter Swings
Complete Emotional Numbness
Agony pain all over my whole body
Severe pressure in my body
Feeling like i choke every sec, hardcore problems breathing
Brain deadness, everything is a blurr.. i cant think like a normal Person .. i feel like a zombie
My body is so stiff i cant move proberbly, it is like a qm paralyzed physical mentally and emotionally

Every breath hurts, it is hard to talk. It feels impossible to exist.
I gave 3 years all i had but i dont recover. And I have enough.

I have very similar. Lots of the same symptoms and other health conditions I can't medicate because alathisua has made me intolerable of the meds required. I also experience paradoxical reactions to all pain medication. Would like your know your thoughts on exiting. I don't have long before force feeding and force medicating, even though Ive told them meds don't work on me, its all in my head apparently so they don't listen and just want to treat me like a guinea pig. I'm terrifiedxwhat they will do to me. What's your strategy?
Thank Soill

 

[RN12]

I have very similar. Lots of the same symptoms and other health conditions I can't medicate because alathisua has made me intolerable of the meds required. I also experience paradoxical reactions to all pain medication. Would like your know your thoughts on exiting. I don't have long before force feeding and force medicating, even though Ive told them meds don't work on me, its all in my head apparently so they don't listen and just want to treat me like a guinea pig. I'm terrifiedxwhat they will do to me. What's your strategy?
Thank Soill

please make it your goal to not let them force you. If your CNS is already sensitised these meds will destroy you.

just a 7 month rounf of SSRI destroyed my body completely. I can't walk anymore because of (suspected) Small fiber neuropathy caused by this garbage. How is it possible that they can force medicate unbelievable. Are you under 18??

Say them they can **** themselves and they can feed that poison to their own children

 

[lymestolemylife]

I have both physical (autoimmune) and mental chronic illnesses.

The last 10 years has been a lot of pain and struggling. I'm 32 now and it's very hard to accept that these illnesses will follow me the rest of my life. Treatment and exercising helps but it's hard to live a normal life.

Having the option to ctb gives me some kind of relief. I don't think it would be hard for me to actually do it but I don't want to pass suffering on to my family and make them feel guilty. So I try to live and get the most out of life despite the circumstances.

I think what is important to remember is that we probably just live once and then it's over. Life can be painful and struggling but when it's over we probably return to nonexistence with no pain or suffering. One day it will be over no matter if we ctb or not.

I like you have the rest of my life looming. How many more trips to the ER constantly changing symptoms that are all torturous, dental problems i'm sure are coming because of the constant attack on my body, how much more pain can I endure ???? It literally scares me to death.

 

[Rational man]

I see more physical decline and im faced with the dilemma of ctb before its too late and end up,so weak that i end up dying from the disease.

 

[Soill]

please make it your goal to not let them force you. If your CNS is already sensitised these meds will destroy you.

just a 7 month rounf of SSRI destroyed my body completely. I can't walk anymore because of (suspected) Small fiber neuropathy caused by this garbage. How is it possible that they can force medicate unbelievable. Are you under 18??

Say them they can **** themselves and they can feed that poison to their own children

I can't get out of it. I'm destroyed by pharma now. My stomach and body are ruined. Have even suffering for 5 months and cannot eat because I get so many horrific symptoms. Mental health are checking up on je and I told them about the meds and the akathisia and food reactions but they are just saying "sure, hmm mm, we understand" you know humouring me!!!! It's sick. They've written pages about what I've said and I'll grant you on paper it sounds ridiculous. How can a prescribed antidepressant give you food sickness and gastrointestinal problems so severe that you lise 3 stones in 4 months? In any case they will come for me soon, force feed through tube, force medicate too because they will see the akathisia and label it "a worsening of my condition" or psychosis. They don't understand the chemical destabilisation that's happened with dopamine, serotonin or gaba, they just want to keep forcing more and more meds. I have no choice but to find a way out. Family all think I "need to eat" but it makes me so ill. If I'm taken, and very soon will be, I won't ever cone back from it. My akathisia is already quite bad, particularly at night and that will mean sedation, possibly strapping down!!!!! I can't take it. Can you give any help if I pm you?
I need some more resources. Anyone? I have to find a way. I'm running out of time. I have massive inoperable hiatus hernia that is causing my head to fill with acid every day. Suffocates me 5 times a night, stabbing cramping burning pain everywhere and will cause oesophagus cancer. I need to get out of here

 

[RN12]

@Soill
I can't PM you because it's said it's private or something. The only thing i can recommend is e-mail David Healey with your story. it's a Psychiatrist and the only one that i know that's researching adverse Antidepressant effects. Maybe he can guide you in what to do.

His website is Rxisk.org
[email protected] email adress

Just add in the email also if you are vaccinated or not. Because he will send an e-mail first with that question.
Sum up your story (not too long) he's always replying in 'not too long words too'.

But maybe you can offer to pay him for an 'medical rapport based on your story' and based on your drug history. He has seen and heard it all for sure.

Or else you can make a free account on SurvivingAntidepressants.org and ask the mods for tips or help. But they will advise stop all meds and give it time... So David Healey is your best bet. I would go for a 'payed' report, because he's busy so i think he can't help all the people emailing him for free. And i understand that. And f*ck the bit of money in this state if it helps.

That's all i can suggest.

 

[Soill]

@Soill
I can't PM you because it's said it's private or something. The only thing i can recommend is e-mail David Healey with your story. it's a Psychiatrist and the only one that i know that's researching adverse Antidepressant effects. Maybe he can guide you in what to do.

His website is Rxisk.org
[email protected] email adress

Just add in the email also if you are vaccinated or not. Because he will send an e-mail first with that question.
Sum up your story (not too long) he's always replying in 'not too long words too'.

But maybe you can offer to pay him for an 'medical rapport based on your story' and based on your drug history. He has seen and heard it all for sure.

Or else you can make a free account on SurvivingAntidepressants.org and ask the mods for tips or help. But they will advise stop all meds and give it time... So David Healey is your best bet. I would go for a 'payed' report, because he's busy so i think he can't help all the people emailing him for free. And i understand that. And f*ck the bit of money in this state if it helps.

That's all i can suggest.

Thank you. I don't know why it says private ?? Shouldn't be. God I'm so stuffed. I really need to die. I'm going to be tortured alive

:,(

 

[RN12]

Thank you. I don't know why it says private ?? Shouldn't be. God I'm so stuffed. I really need to die. I'm going to be tortured alive

:,(

it says 'This member limits who may view their full profile.'

How long and what meds you took?? I see you're 5 months in thise severe state but don't give up too soon. People heal after time. Don't give up. But i understand the distress about that shitty psych ward. It has to be prevented. Don't ever take an antipsychotic pls!! it is horrific stuff and the main cause of Akathesia. So it will make things worse. They will kill you if they give you that.

The only thing on the withdrawal forums that helped (some) of the people with akathesia were 'benztropine' or 'propranolol'
So if they have to force drugs on you and you can't avoid then ask for 1 of these 2 first to try out. I don't have Akathesia, but i have severe other nervous system trouble from an SSRI. I research Akathesia because it got my attention. The only 'pharma' things that helped people that i read were these 2 meds.
The only natural stuff that helped people with Akathesia that i found was 'Dad's Elixir'. Check out there website and i would advice to check it out if you think it is possible with the sensitivities....

Shop | Dad's Elixir | Artisanal Infused Treats

Dad's Elixir creates Artisanal Infused Treats compliant in all 50 United States plus Puerto Rico.

www.dadselixir.com

And ask in the message bar which one works for akathesia, i think they know about the condition because i saw someone on youtube who got it from them to try and it worked wonders.

So far my info about the condition

On the surivingantidepressants forum they say, the body comes back in balance but can take a long long time and only of no meds are added. I saw people with the food and chemical sensitivities that cleared up eventually. But only time is the healer, timetimetime. It's not what we want to hear when every second is torture.

But eventually it can clear up and the CNS can repair itself even if it doesn't feel like it at ALL!
You have to find out what you can eat and drink. Just eat that and nothing else to prevent stressing the system. Can't you eat oatmeal? Or i saw some people that ate baby foods. Your loved ones are right you have to eat something but it's easier said then done when the system is so haywire and push off the foods. So you have to find out what you can eat/drink. Maybe protein shakes? To keep some muscle mass.

I hope you can prevent the psych ward, it will make things worse and worse. They don't understand this shit. Only David Healy does and that's a shame that only he does.

Let your parents resourch Rxisk or survivingantidepressants website. Or let them make an account on survivingantidepressants and let them tell them your story so they can see what the moderators will say, They will say NO psych ward or medications, so maybe they understand after that

Print out things about akathesia show it to them and to your parents. Let them check the Akathesia aliance FB page. I know it's not easy to let parents read into this stuff, my parents won't either. If they wanted to read into it then they maybe understand

I guess the best bet is explaining to David Healey, send him some money and let him make a report, diagnosis and treatment plan. So you can show these idiots from the psych ward. David Healey is a psychiatrist that understands these conditions and is fighting for the truth. The only good psychiatrist i know.

Akathisia: Definition, Symptoms, Diagnosis & Treatment - RxISK

Akathisia is an emotional state caused by over 100 different drugs, primarily antidepressants and antipsychotics, but also antibiotics, anti-hypertensives and others.

rxisk.org

Very good channel also from the video i sent. This guy is in withdrawal and can explain perfectly how bad it is. I hope you can show your parents so they can understand how it works.

I pray that you will make it buddy,
You sound too young to leave... Don't let pharma win. Healing is possible

 

[Artemis7]

The last 6 months have been absolute hell. Severe neurological, immunological, and endocrine symptoms along with severe fatigue, pain, and illnesses. 3 hospital trips, innumerable specialists and PCP visits with no one able to help me. Lost all hope in medical community.I was dx with fibromyalgia and suspected CFS at one point. Also may have Hashimotos disease. What is worse is I suspect something way more severe going on that kicked all of this off...if I am right I have the joy of looking forward to further neuro debilitation and/or cancer with basically no treatment options as time goes on. It would be slow and excruciating. I also have anxiety, OCD, and now depression from physical ailments. Basically have been in bed for the last 6 months.

 

[dropintheocean]

Hi friends! Anyone here is going to or has applied for VAD in switzerland?

 

[Spiritual survivor]

Genital herpes, ADD, hashimotos :("

 

[antoniamonroe]

Hello, I was just admitted to the forum. I have been disabled with chronic illness for almost 27 years, since the summer I turned 13. I have ME/CFS, POTS, IBS, chronic migraine, vulvodynia, etc. Not many of my bodily systems actually function properly. I've been housebound most of my life, I had to drop out of school in the 8th grade, needless to say I've never been able to work. Brain fog is the most difficult part for me, I have a good imagination and could probably live happily through books if I could read for longer than a few minutes.

There's no treatment for my primary conditions or even a way to alleviate my worst symptoms. I feel like I've suffered long enough and I know that doctors would sentence me to death in a triage situation, so why can't I choose to humanely end my own life? I'm glad I found this forum. Everyone in my life treats me like a child, but they're the ones who refuse to accept the reality of my life.

 

[pphelpme]

Hello, I was just admitted to the forum. I have been disabled with chronic illness for almost 27 years, since the summer I turned 13. I have ME/CFS, POTS, IBS, chronic migraine, vulvodynia, etc. Not many of my bodily systems actually function properly. I've been housebound most of my life, I had to drop out of school in the 8th grade, needless to say I've never been able to work. Brain fog is the most difficult part for me, I have a good imagination and could probably live happily through books if I could read for longer than a few minutes.

There's no treatment for my primary conditions or even a way to alleviate my worst symptoms. I feel like I've suffered long enough and I know that doctors would sentence me to death in a triage situation, so why can't I choose to humanely end my own life? I'm glad I found this forum. Everyone in my life treats me like a child, but they're the ones who refuse to accept the reality of my life.

I'm also really glad I found the forum. No on else understands what it's like to suffer so much. I'm sorry you are carrying such burdens.

 

[Dizzylady80]

My condition is completely overwhelming me right now. I've got atypical long-term post-herpetic neuralgia (phn), and the medicine that was once effective for it has slowly been failing the past few months. It's a long story but after going through every neuropathic painkiller with no success pregablin and lidocaine suddenly started actually helping the pain, but now they just barely keep it from consuming me. I'm looking into clinical trials but there are waits and I'm not very hopeful. It normally doesn't last longer than 6 months but I've had it for almost a decade.

I can't even properly explain how bad it is y'all. Phn is weird because it switches how it feels (electric, stabbing, burning, etc.) seemingly at random which makes it incredibly difficult to get used to, and it's so sensitive that doing anything with the left side of my body makes it worse, even though it's on my back. Even typing hurts. It makes me afraid to move my body at all. I've been bedridden so much lately that my muscles are atrophying. I have to walk with a cane and can barely get around doing that, and if it gets worse I'm terrified because I won't be able to use a wheelchair that isn't electric

It's so goddamn intense!! Right now it feels like I'm being tazed, minus the convulsions. Earlier it felt remarkably similar to wasp stings. I fucking hate it. It takes over my thoughts to the point where it's all I talk about nowadays. I wanna have normal conversations without flinching and writhing in the middle of a sentence. I want to go outside without the wind or sun making me feel like I'm being stabbed. It went away for a couple years and I was FREE, I was happy and loving life so goddamn much, then it came back and ruined everything. Them medicine miraculously started helping and I thought I was going to get my life back, or at least be able to build a new one, but now it's gotten so bad that I can't even do car rides without intense ramifications.

I went back to school when the meds were helping, I was gonna be a kindergarten teacher. Wanted to help children see the beauty in the world and help them have a better life than I did. It's all gone now. I'm a 26 year old woman, like I'm supposed to endure 40 more years of this?? That's just cruel

This was a big ol rant, sorry but I'm just so overwhelmed with this pain right now. Didn't even get into the financial, social, and emotional ramifications of this. Like how am I supposed to maintain a relationship with someone like this? Pouring words into this website helps distract me, and and is cathartic. I want to be happy, or content. I wanna make the world a better place. But it just doesn't seem like that's an option for me

The last 6 months have been absolute hell. Severe neurological, immunological, and endocrine symptoms along with severe fatigue, pain, and illnesses. 3 hospital trips, innumerable specialists and PCP visits with no one able to help me. Lost all hope in medical community.I was dx with fibromyalgia and suspected CFS at one point. Also may have Hashimotos disease. What is worse is I suspect something way more severe going on that kicked all of this off...if I am right I have the joy of looking forward to further neuro debilitation and/or cancer with basically no treatment options as time goes on. It would be slow and excruciating. I also have anxiety, OCD, and now depression from physical ailments. Basically have been in bed for the last 6 months.

That sounds high-key unpleasant, I'm sorry you have to deal with that. I know that feeling of getting disappointed by doctors again and again, it's incredibly disheartening, especially if you inevitably run into doctors who are giant assholes

 

[JinnDX]

I appear to have developed autoimmune dysfunction 1 Week after the flu fax in March last Year. I only have signs and symptoms. Possible Hashimoto or Addison disease but not fully diagnosed. Maybe a new hybrid type but im exhausted, pain, lost weight, vomiting, fevers, gut gets paralysed. I used to be fit and strong. Drs have given up with me.

I too have "collected" several conditions after a vaccine. For me it was the yellow fever vaccination.

I am a complete clusterfuck now. From 100% healthy to severe cognitive impairments and much more.

I have connected with people that had adverse reactions to the covid vaxx. Some do improve over time.
Also there is now a specialist clinic in Germany for people with those reactions. Some improve with their medication.

 

[Rational man]

I too have "collected" several conditions after a vaccine. For me it was the yellow fever vaccination.

I am a complete clusterfuck now. From 100% healthy to severe cognitive impairments and much more.

I have connected with people that had adverse reactions to the covid vaxx. Some do improve over time.
Also there is now a specialist clinic in Germany for people with those reactions. Some improve with their medication.

Thats awful. Physical disease often affects our mind well-being.