/r/ChronicPain

Photograph via snooOG

For the broken, malfunctioning, pained people of the world and their friends/family. Got pain? This is the place to be. Bitching, complaining, whining, and otherwise venting about your condition is encouraged. Stop by the chat and say hi!




PLEASE READ THE RULES

BEFORE POSTING!!




NOBODY HERE IS A VERIFIED MEDICAL PROFESSIONAL

While reddit does not explicitly ban medical advice in their ToS anymore, it is best to avoid giving medical advice over the internet in general. Soliciting or giving medical advice is strictly forbidden in this subreddit. Sharing your failures or successes concerning your experiences with treatments is fine. Remember, we're all strangers here. You don't know how your advice might affect another person's well-being, no matter how well your intentions might be.

DO NOT POST ABOUT YOUR PAIN IF YOU HAVEN'T SEEN A DOCTOR RECENTLY.

If it's bad enough that you feel the need to post about it then it's probably bad enough that you should go to a doctor.

NO POSTING OF SURVEYS, STUDIES, OR RESEARCH PROJECTS!

We are not your focus group. To protect users from harmful and improper management of survey data and unpaid usage of our communities time (a chance to win a giftcard is not compensation for the time and effort of humans).

All posts soliciting or giving advice about how to obtain specific (or groups) of medications will be removed. Do not post anything regarding the misuse or abuse of your medications. Do not post ads for medications. You can and will get banned for this.

Self Promotion

We try to follow Reddits self promotion guidelines when determining if content is acceptable or not. In cases where lack of community participation, excessive links/posts, or if content is better suited for ads, it may be removed and/or you could be banned. If you're unsure whether your content fits self promotion, feel free to message the mods.


Crisis resources

You can find a list of crisis hotlines on this wiki. There's also an FAQ about what to expect when calling.

For medical help, the emergency room is always the first choice. Most insurance offers nurse help lines as well.

We will remove posts soliciting or giving advice about suicide. Posting about how you feel is quite alright, but please don't ask for advice about how to end it all. Sometimes, simply venting helps!


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Come on in and say hi!


Other helpful subreddits

(Please read their sidebars for posting rules prior to posting!)

/r/ChronicPain

103,710 Subscribers

5

Can’t stop obsessing over my pain, which makes it worse

Anyone dealing with pain related anxiety/ocd/ruminations? I’m just like rly struggling with this and could use some tips?

I keep convincing myself that if I just try this one other thing it’ll go away or if I try to get this one knot out it’ll be better and it just hurts more

0 Comments
2024/04/27
03:34 UTC

2

substance use and being in pain

hello, i’m a college student and i haven’t been physically pain free in 3 years. i love my disabled local community but lately i miss my good health. i picked up nicotine usage heavily the past 7 months but dropped it since my eyesight and circulation decreased horrifyingly, my left arm is numb as i type this.

i’m looking for people who have struggled with chronic pain and substance abuse/overuse, and any advice on how to prioritize my health over substances. as well as when/how to find an appropriate doctor for this…peace on planet earth

1 Comment
2024/04/27
03:14 UTC

3

please help

i actually dont know what to do anymore. i am in so much pain i want to scream. lidocaine didnt work, heat isnt working, and i cant find my tiger balm. ive taken naproxen every day fir a week now and i just cant deal with this anymore. i have to go to a choir event tomorrow where i have to stand for two hours and then i have to go and work tech for my high school play. i already missed opening night and i dont want to miss the second night since we only have three shows. my mom pressured me to do the choir event despite me knowing and saying that i wouldnt physically be capable and now im riddled with guilt and anxiety because i cant just say “sorry cant go” the night before. i just dont know what to do anymore.

3 Comments
2024/04/27
02:56 UTC

3

What do you guys do when you’re feeling really down?

What do you all do when you’re just down in the dumps about being in chronic pain all the time? The things that I used to do that would help me with my mood don’t really work anymore. For example- exercise seems to just bring more pain. As someone who can only work part time, retail therapy is pretty much out of the question.

5 Comments
2024/04/27
02:53 UTC

0

Started drinking cause of pain

Don't care anymore

0 Comments
2024/04/26
23:17 UTC

1

Does my BF have to live with his condition with no help?

Posted this in a couple other subs but I was advised to post here as well. Forgive me if this is repetitive and something similar has already been posted here.

My bf (21M), almost fiancé, has an eosinophilic autoimmune disease that messes with his eosinophil count, as I understand it. The variation he has affects his esophagus as well as his colon. He has had this for as long as he can remember, his mom, dad, and grandmother all have it. Since his condition was not discovered until 2003, the year he was born, he's spent his life trying to explain it to doctors who still know nothing about it. A couple of years ago he got tired of this and just sort of "gave up." Recently it has gotten much worse and he realizes he can't continue to "deal with it." We can't afford the medication he would need right now (even with our insurance it's crazy), even if we cut back on expenses. If we did that, we wouldn't be able to buy groceries as we spend very modestly. It's one or the other. Yes I know we could try to reach out of packet maximum but once again, too expensive.

He has an extremely hard time keeping food down, even when he avoids his allergens (dairy, soy protein, tree nuts, and poultry). More often than not he chokes on his food because his esophagus is so small and has to spit it out/throw up. As a result, he is severely underweight for his age/sex, by about 60 pounds. He spends an abnormal amount of time in the bathroom because his body is constantly attacking itself. He says he never goes a day without feeling nauseous/in pain. It's just a normal part of his life.

As you can imagine, he has to call out of work or come in late quite often. His employer (he works as a powersports technician) hasn't fired him but nearly every day he gets made fun of, his job threatened, or coworkers telling him that he's lying. They have his medical records (to prove he's being honest), so I have wondered if we could take action because of their negligence? Does he need some sort of "waiver?" I understand you won't always like your coworkers but this is ridiculous. He’s been there for 1.5 yrs but they act like he hasn’t even been there for 2 months. They have told him he will never move up in the company or get a raise if he "keeps up this behavior." This "behavior" is a condition he did not ask for. It's getting to the point where we can't afford how much he has to call out, but obviously I'm not going to bash him for something he can't control. I understand "pushing through," and he does push through the days more often than not, but it's beginning to take a significant toll on his mental and physical health. Just today his boss accused him of being on drugs because of how skinny he is. Not f*cking funny.

My question is, does anyone know if he can apply for disability with his disease, and what other resources we should look into? Are there any? Not sure if disability is even worth the effort with him being so young, and I've heard you can't even apply for it if you aren't currently being treated or something like that. I hate to see him suffering and we really need two incomes.

1 Comment
2024/04/26
22:49 UTC

14

Success Story 🤞 and Thank You

I know it can be hard sometimes reading about others being relieved of their pain, but I just wanted to write this because I’m so happy and want to say how much I appreciate all of you and this community. I really don’t think I could’ve done it without coming here and hearing words from others in similar situations as me. I wasn’t very active on this sub but checked it several times almost daily.

For me I was in severe pain for well over a year. Not that long compared to others but it was a very difficult time for me. I’ve had several bad injuries before, but I was completely blind to the the life of severe daily pain. It totally flipped my life upside down. I lived a very, very active lifestyle before my pain started. I watched myself go from the fittest I’ve ever been to being unable to get out of bed without painkillers. I lost my job, lost some close friends who couldn’t understand why I didn’t want to do anything anymore, lost an unhealthy amount of weight as I was barely able to eat, poisoned myself with excessive NSAID intake, and had countless sleepless nights. You know the drill.

After some very frustrating doctor visits, misdiagnosis, and a lot of wasted money I found a doctor who took a scan of my leg and found a bone tumor right on my knee which was classified as osteoid osteoma. For those who might have similar symptoms they included: severe pain especially at night, very sensitive and painful to the touch, pain extending throughout entire leg and into back, and only relief from NSAIDs. Truly the worst thing I’ve experienced. Easily the worst pain of my life far worse than any other fracture, dislocation, or surgery I’ve had. I had the tumor surgically removed a few weeks ago and am feeling much better. I’ve finally gotten proper sleep for the first time in over a year, am starting to flush my system of painkillers, and have energy again.

I’ve got a long road of recovery ahead but I can manage that much happier than the pain. Never again will I take a pain free day for granted. I’m not as strong as many of you and this surgery was my last hope. I don’t think I would’ve lasted much longer if it didn’t work out. Hearing stories/voices of others who understood what I was going through was a huge reason to why I was able to stay afloat. I love you all and I wish the best to everyone in this community.

3 Comments
2024/04/26
22:37 UTC

3

Any recommendations for making driving more comfortable?

I’m looking at heated seat covers and cushions/back cushions. leg pain is something I definitely struggle with when/after driving, as well as back pain but that’s more just from sitting for a long time… wondering if anyone has any recs for little things to make it a bit comfier/more supportive.

2 Comments
2024/04/26
22:30 UTC

9

Has anyone found meditation helpful in any way? If so how do you meditate?

I’ve tried many times but the pain is just too intense.

18 Comments
2024/04/26
22:27 UTC

2

Thought I would share a picture of my most recent MRI.

This is my left shoulder, I've been having trouble lifting it fully up. It's the only picture I thought showed anything. Doctor confirmed it's toren, and said I can get a diagnostic scope to see how torn.

My neck surgeon has been good to me, and he recommended him. He did his father's shoulder surgery, but since I've gone he's not seemed to reciprocate the feelings. He didn't like when I told him my neck surgeon said the limited motion is most likely coming from my shoulder.

He was insulted, even though he never looked at my shoulder. I guess because he can force it up, and I just let him. It hurts yeah, but nothing I would scream about. I'm always in so much pain, that it's shoulder pain and doesn't compare to the spine pain.

So he thinks the weakness is neurological, and from my neck. But the doctor under him, who my appointment was with for my follow up. Told me that my tear would limit those range of motions. I told him I never did shoulder specific physical therapy for my shoulder, but did do some for my neck.

He then went to check if the doctor wants to schedule me for surgery. My neck doctor, said he didn't think it needed surgery. But physical therapy and an injection. He reviewed my MRI, since it's accessible for him. He is helping me with my disability case as well, so he is someone I trust.

He's my 4th neck surgeon, and hasn't blown me off like the others. Because I am a difficult case, abnormally large bones and some joint disorder. I have a rheumatologist looking into it.

I told my therapist this story, and he said it sounds like a cope out. When I recapped my appointment with the shoulder doctor. He offered to do a diagnostic scope, and could do surgery. But he doesn't think it would help my range of motion.

I get the feeling, just like all the other doctors he is afraid of tarnishing his record. He doesn't think I am in pain I guess, but it's constant pain. I'm just so used to constant pain, I don't scream and cry when I'm in pain. It's a 7 in my shoulder, and a 9 in my lower back, and an 8 in my neck. At the base of my cervical spine.

Which does need surgery, but isn't the cause for this particular pain. My neck surgeon is planning to do surgery there, but he said this pain isn't that. And that pain isn't going to be helped with surgery.

As he put it, he's sorry I'm going through this. It's not fair, but sometimes surgery isn't going to help. He wanted me to stop working, and have a slow schedule. He said the surgery will happen, but I should wait till I need it for my quality of life and not working for another year. Plus he can't fix my lower back, I would have to find a lumbar or full spine surgeon for that. And that's the biggest hurdle to working.

So I think I should find a different shoulder surgeon. Guess I just wanted some other takes. I mean with my therapist chiming in, I think it's a no brainer. My shoulder surgeon said I should get another opinion on my neck.

As I told my therapist, I don't want to have to choose which doctor to trust. I want to be able to trust them both. But I guess I sort of talked it out with you guys.

0 Comments
2024/04/26
22:00 UTC

16

My only options are now back surgery or pain meds

I don’t necessarily want to be on pain meds. I want them while they’re figuring out what to do with my back, for relief, but I don’t want that to be my only option for the rest of my life. Pain management says my options are back surgery or pain meds and I don’t want either because I’m only 24. Does anyone have any words of advice on how to deal with such a huge life altering decision?

31 Comments
2024/04/26
21:43 UTC

2

I recently got the Sprint device and it's fantastic!

For those unfamiliar, it's a thing where they implant electrodes next to you nerves. There a lead that comes out that's attached to a device that powers and I presume controls it. The only thing inside your body is the electrode. There's also a thing on a lanyard that gives you status and let's you control the voltage level. The entire point is to "reprogram" the nerves and you wear it for a couple months for a lasting benefit.

Anyway I have it implanted in my lower back and it's been amazing! I'm able to do more, I feel hardly any pain in my lower back and I was even able to do a little car work after 12 years of not being able to do any before pain set in. I'm telling you, it's been nothing short of a miracle. There's no way of knowing how long the relief will last after they take it off but for now I'll take it!

6 Comments
2024/04/26
21:18 UTC

6

How do I support someone with chronic pain?

I’m dating a guy who has a very severe skin condition, which causes him to be in a lot of pain every day. He doesn’t tell his friends or family about how much physical pain he’s going through which has caused him to become very closed off. It’s not just physical pain but also his appearance and all of it is taking an emotional toll on him. After a few months of dating, he opened up to me about it and I don’t know how to comfort him. He knows that there is no longterm solution to his condition.

He’s a person that avoids confronting his problems cause that’s how he dealt with this condition and family, and I understand his response, but it is putting a strain on our relationship with him being so out of touch with reality when he’s with me. I’ve asked and he does not want to seek therapy from a professional, which in my opinion is more trained in these methods to help people cope, which is why I’ve come here to ask how do I approach this? I really care about him but it makes me feel quite pressured being his entire support system

3 Comments
2024/04/26
21:10 UTC

19

If you could sit down with an expert on your condition and have them answer them one question, what would it be?

My sister and I were asking each other this question. She wants to know what to do when the pain is really, really bad and nothing she has is working. (What are the best options for pain medication management?) For me, it's "What does the most current research say about what causes (and maintains) fibromyalgia?"

24 Comments
2024/04/26
21:03 UTC

4

Blocked neck.

My neck is completely blocked tonight. I can't move it even by an inch because it hurts so, so bad.

This flare up is different and definitely more worrying than all I've experienced so far.

I'm losing vision in the left eye, enormous headaches at the back, neck pain and now a locked neck. And 30 other symptoms we identified with my GP. Physical and cognitive.

I'm applying cold beads and it kind of temporarily relieves the pain. Bought them today and no regret.

Otherwise I don't know how to deal with the pain. Meds don't work very well.

My first MRI should be in 3 weeks-ish. I hope they find something. It's so frustrating not to know what the hell is going on.

And on top of that my muscle weakness is also terrible today. Nearly fell several times.

0 Comments
2024/04/26
20:56 UTC

79

Embrace your abilities and accept your disabilities.

Sitting in front of my workbench after my daily lifting and thankful for what I can do. I can barely walk but I can lift heavy shit so I enjoy that. I collect my action figures, read my comics, move my dumbbells and live the best life I can. Love yourself friends and find your smile. This life is hard.

7 Comments
2024/04/26
19:34 UTC

34

It was the d*mn nurse

Let me preface this by saying it might be a little long but Im really annoyed.

My husband is considered a very good patient at his PM clinic. They drs literally refer to him as a very good patient.

He was lucky and didnt get hit with the shortage until Nov. His mg was changed from 10 to 7.5 due to the shortage. (His contract said dont use another pharmacy and a nurse implied he could not even with the shortage).

In January he had his 3 month (he only goes every 3 months) appointment. We had a blizzard. He had his RX called in and appointment rescheduled to the next available which was 3 weeks later with a different dr. Which was fine.

We liked her, she seemed nice. She asked how it was going and he explained the problems he was having pre mg change. They agreed he needed an increase. I interjected that our pharmacy would be out of 10s until March. She asked about different pharmacies and he said about the contract to which she replied they were allowing it because of extenuating circumstances (first nurse fib) but as theyd have the correct mg next month he agreed to just take the 7.5 until then. They agreed to increase the 7.5 (refilling few days early because increasing that day)and when the 10s were back that would be bumped up too because that was failing (my husband has been on the same mg of 10s for over a decade). He gets paperwork stating all this.

Right before the script was to be filled two days later pharmacy lets me know they actually do already have the 10s. So I call PM for him (PM is aware he works 12 to 14 hours a day 6 to 7 days a week plus our farm and i handle most things this isnt abnormal for us), let them know the 10s are there. Nurse calls me back and says dr says can have an increase and early fill day only on 7.5s. No increase or early fill date on 10s. I said but hes already increased dose that will leave him without meds. And i have paperwork showing that isnt what was discussed. Nurse says dr says if he is started at such a high dose there is nowhere else to go. I said but its not starting him at it. He has been at just a small amount under that for over 10 years. Is there a cap on dosage? Nurse says not really but thats what dr said. I said okay leave him at the 7.5s and hung up (with the 7.5s he was getting a 5mg a day increase still then).

So he has his follow up today. They scheduled it with the same new dr we saw last time. Nurse comes in and i kindly asked to have my husband moved back to his other dr as they have a relationship (but really it was because of this garbage). Dr walks in and says "so did the pharmacy get the 10s in yet?" And my jaw just dropped. I relayed everything back to her. She nodded. Wrote down the RX she wanted him on walked out of the room and tore into the nurses (one of which called me a liar but as the dr pointed out there is no way he would still be on 7.5s unless I was telling the truth).

No doubt this means that the nurses will have it out for my husband but for some reason they were already messing with him. And I dont know why because the drs very much so like him (which amazes me considering how everyone else including myself is treated).

6 Comments
2024/04/26
19:00 UTC

164

Here is what I found

So I went to a CVS to fill a script of Tylenol #3 along with an antibiotic for a dental problem. I handed the script to the young lady, she took one look at the Tylenol 3 script and in a very sarcastic way said, "it's out of stock." So I asked what if my doctor changes the script to something else? "It's out of stock too." I asked how does she know, since the new script was hypothetical? Her reply was, "CVS no longer stocks nor fills opiate medication." I was sort of taken back, thinking what if some poor soul is about to have a painful surgery and this what they are told after the fact. I know many in this group rely on opiate pain medication, just to survive. What do you do in this situation?

I myself have changed over to kratom for pain relief for the last 5 years so I had no idea that this is what things have come to. How do you make it???

81 Comments
2024/04/26
18:37 UTC

0

Delayed response to medication

Does anyone else find they have a delayed response to pain meds? I frequently get pills caught in my throat, and can feel them sitting there burning for hours. If I eat something hard like an apple that can help push it down sometimes but not always.

What is odd to me though, is sometimes I can take a pain med at night and I don't feel it kick in til the next day. Is this even possible? Even if stuck in my throat wouldn't it eventually dissolve?

I took my medication last night as usual. They're tiny pills so I didnt feel it stuck in my throat, but i also took a magnesium supplement about an hour later and could feel it stick in there for hours. I spent the whole night awake and in pain because the meds didnt work, but now this morning they've suddenly kicked it. Does anyone else experience this or am I imagining it?

8 Comments
2024/04/26
18:27 UTC

3

Picking a new mattress

Wow, after a few nights looking up mattress options - Im so lost.

I need one for chronic pain and hip problems. I am young but thats been an issue 10 years strong.

My present mattress does need to be replaced.

6 Comments
2024/04/26
16:24 UTC

1

Those who had success with steroid injections

I’ve posted here a few times that I am now almost 23 weeks pregnant and have been going through chronic nerve pain in my neck/shoulder that goes down my left arm. I’ve done all the conservative treatments but continue to be on high doses of Tylenol, more than I’m comfortable with, but I have no choice right now.

I finally received a steroid injection Tuesday. Although this was completely approved by my OBGYN, the pain management doctor hinted that she put “a little” steroid in. The next day my time in between Tylenol doses extended and my pain was more tolerable. By the afternoon of the next day, that started to fade and now today I’m back to excruciating pain every 2-3 hours where I’m sitting my shower for relief. I’m just wondering for anyone who HAS had the injection improve symptoms how long it took. Did it have a gradual affect? Or is this my sign that it didn’t work for me.

11 Comments
2024/04/26
16:21 UTC

43

What’s up people

Thought I would introduce myself. I’m 33 years old and have been dealing with chronic lower back pain for 10 years. I’m not sure where my back pain started but I used to do a lot of hitchhiking and very very long car rides regularly (from 18-25)… I’ve been on methadone for five years and I’m at a pretty high dose— almost 200 mgs— but I would like to get off of it some day as it seems like my back pain is terrible whether I’m on or off of it. I’ve tried chiro, PT, acupuncture. Massage helps a little bit sometimes, at least with relaxation. I’m struggling with work because I frequently have to call out because I’m in too much pain. Slowly finishing up on an art degree at community college. So much more I would be happy to share if anyone wants to shoot the shit. Picture is of a recent painting I did. Bless up!

11 Comments
2024/04/26
15:43 UTC

2

Successfully self-treated chronic ligament pain

First off id like to say before taking anything I write onboard, to discuss with your own medical professional for advice before trying anything I may suggest.

I wanted to share my experience in the hope that it might help someone else who is trying to find solutions to their pain. I remember how hopeless and trapped it feels to have this terrible health problem.

I'm 41. I sustained chronic pain in my right wrist after a tennis injury 7 years ago in my dominant hand. I was diagnosed with a tfcc tear. I had two MRIs, several injections and debridement which only made the pain worse. I had to change hand dominance, i couldn't paint which is what I love, I couldn't play sports, its was terrible, it sometimes affected my sleep.

I also sustained sudden onset left foot pain during these 7 years, no clear cause was found despite investigation but it was thought to be a ligament issue. I had to stop hiking and couldn't look after my kids without pain.

In short, 3 things helped, in this order. I am now pain free, i can paint, and do weights i can do the dishes with both hands.

-keto diet

-graduated resistance training

-cold daily showers

1 thing really didn't help

-rest (counter-intuitive - but ask any physiotherapist)

There is a lot of information on subreddits about how to get started with these. I think that it may have been something in my diet that may have been causing chronic inflammation. The pain in my ligaments decreased 80% 2 days after I started keto diet.

As an adjunct i'd like to say that the constant pain and loss of confidence can really make you feel a victim, eliminates hope and positive thinking. Try and embrace that inner hero, and please don't give up in trying to improve your situation or trying new things. These things may not help you though, we are all built differently.

Again I just wanted to leave this here in the ether, for other souls who maybe trying to find solutions. Reddit was instrumental in my recovery, giving me ideas on what to try to recover.

I wish you happiness and healing to all of you that are suffering with this.

I love you all.

1 Comment
2024/04/26
15:24 UTC

8

Appointment

How do I talk to the doctor about putting me back on the meds that actually help? Last month he wanted me to try a different pain med , he was talking about resetting my body . I have been on the other pain med for 4 yrs , no issues , no moving up it’s good. He said he was worried about me getting used to it and needing more, and of if I needed to go up I’m mg like to the 10’s 4x a day . I would be at the mme limit , which I still don’t understand . How do I ask him to put it back this month has been awful 😞

10 Comments
2024/04/26
15:23 UTC

3

Nerve Ablation

hi i had my 2 diagnostic blocks and they were pretty awful. they called me today saying they could get me in early so yayyy ablation time. im so scared I can’t stop crying and i have no one. it is going to be just like a block but a longer process? all I know is they said it would be longer. and im driving myself

10 Comments
2024/04/26
14:28 UTC

2

need advice on where to go next // tw healed sh scar pictures

hi i know this doesn't constitute professional medical advice, however here's where i am.

all my life i've suffered with chronic GI issues and chronic pain both joint localised as we as widespread abdominal pain, which when i was a young teen often ended me in A&E, where they would do bloods and sonography and come to the conclusion that bc i was deemed by their tests to be fine, that it was psych and that i was faking- it got to the point my family even stopped believing me.

and this went on for 3 years the on and off goings to hospital until every hospital in the region, my own family stopped believing anything i said so i toughed it out, im 20 now and i still have severe widespread chronic pain and all i can do for it is take pointless amounts of ibuprofen and paracetamol. which quite honestly does nothing but i'm scared to mention pain again to medical professionals because of the gaslighting ive received in the past and i don't want to be seen as drug seeking.

it was when i was 15 that it was brought to my attention by my GP that dislocations aren't a normal everyday occurrence, context being my shoulder came out mid appointment so i reduced it really quick, and my GP asked me more about that and i explained how i dislocated shoulders knees fingers thumbs jaw practically daily, and she then told me to look into EDS more and sent in a rheumatology consultation, it was at this point i looked into it more and it made sense to so much stuff, it felt right in the sense that even tho i know it's incurable, it's a reason and means i wasn't going mental.

the consultation appointment arrived and it wasn't with the consultant rheum that i was referred to but one of their lower colleagues, in the assessment i was told to do the beighton assessment, i scored points for fingers, thumbs, and hands to the floor, (even tho im pretty certain my knees hyperextend, perhaps it was the clothing i was wearing on the day didn't show it, i don't recall) either way i was one below the cut off so made it up with having had more than 1 prior dislocations and considering myself hypermobile.

they then went through the criteria, giving me points in section A of 0/12, B: 0/1 (no diagnosed relatives) and C: 3/3.

i failed the assessment

i was understandably quite disappointed in a way not because i wanted to be unwell but because i am and still have no idea why.

fast forward 5 years to the current day, i still have chronic widespread pain, i still experience dislocations on the daily, and i still have chronic GI issues. my thing is, im wondering if its worth getting reassessed as looking at this criteria as an adult, im almost certain i fill more criteria than i was first shown to.

starting with the beighton score, my fingers thumbs and touching the floor all still apply but both of my knees do indeed feel as though they go back when i stand up which logically would also fill the hyperextension knees category giving me 7/9 instead of the prior 5/9

secondly, from section A, i believe i would gain points for soft skin, mild skin hyperelasticity, dental crowding (as told to me from a dentist), unsure wether i gain points for scaring (i have some scars that to me look indented ill attatch pics tw sh scars but yea), and i can show steinburgs sign on both hands but only by like a mm or 2 so idk if that counts ill attach a photo too,

section B, whilst i don't have a family history, i have no true way of knowing as i have never know or had any contact with my fathers side of the family, and my mother and sister are both equally as hypermobile as me (sister doesn't fit the criteria, although i believe my mother may, but she is unwilling to get assessed) so i assume there is at least somewhat of a genetic link there.

and section C as prior is 3/3 with chronic musculoskeletal, and widespread pain along with daily subluxation and dislocations

my query is wether you think it would be worth trying to get my gp to refer me again now that i am older, or wether you think i should try to explore different answers. thank you for your help.

scar pictures //healed sh tw: https://ibb.co/T1q13Jr https://ibb.co/cwcj15G

steinberg test attempt: https://ibb.co/dQLHnFt https://ibb.co/yntXPM9

2 Comments
2024/04/26
14:15 UTC

1

Needing Some Advice- Job Change

So I was laid off earlier this year as there was a reduction in work force at my employer.

I received my severance and was told they paid ONE WEEK, towards COBRA if I choose to elect for that.

I thankfully was able to get a new job, but there is a probationary period of 60 days where I will be without insurance until the end of July, and I’m not even sure if my doctor will take this new plan as I haven’t been given specific yet.

My doctor gives me 18 pills of pain meds every 2 months or so. I just went to see her last week and ended up needing to take half of the supply for my treatment pain plus a really bad strep throat infection.

Typically I would wait until next month to ask her, even if I ran out early. However, my current insurance is ending at the end of this month.

Has anyone been in this kind of situation? And is it a red flag if I were to call her today and ask for a backup script during this insurance probation period?

Originally I thought I could offered the COBRA until my new plan began, but I cannot… The price is insane.

3 Comments
2024/04/26
13:52 UTC

0

How I Ran A Marathon After Being Paralysed

6 Comments
2024/04/26
12:55 UTC

42

Mri normal, CT scan normal, xray normal, ANA,ENA,RF,ESR,FBC Blood tests normal why the fuck am I still in pain.

In April of last year I woke up with right lower back/hip pain and I brushed it off as just symptom of sleeping in an awkward position or potentially strained muscle from increased exercise the previous day but here I am a year later still in pain and getting progressively worse.

There's just this dull radiating aching, burning/scratching sensation that will not go away and while constant, the level of pain from 3 or 4 to 5 or 6 (sometimes worse on a bad day) is completely unpredictable it does not corrilate with increased rest or exercise or time of day and it's honestly driving me crazy because typical pain medication like paracetamol and ibuprofen do next to nothing.

Sitting for too long hurts Standing for too long hurts Walking, stretching, exercise, anything I do for an extended period of time just hurts.

I've been referred to a psychologist and psychiatrist because my doctor can not find the cause of my pain and one of the only options left Is psychosomatic and honestly at this point I don't care if it's all in my head I just care about figuring out what I can do to fix or even just manage the pain.

What can I do?

What coping mechanisms can I use to deal with nagging pain?

What other causes or concerns should I bring up to my doctor/physio/future psychologist?

I just want to make sure I'm not missing anything that could help me understand and manage my pain I'm a week and a half away from turning 20 I'm young all my tests say I'm healthy I have so much of my life still ahead of me yet I'm at a point where I have no clue how to effectively enjoy my life in my current state of chronic pain.

84 Comments
2024/04/26
11:15 UTC

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