Help?

I’ve had an undiagnosed/helped physical condition that has turned into mental/overall conditions either directly relating to physical or separate, like a severe change in overall self. will explain physical issues first…For a year, have had 24/7 CHRONIC 20 OUT OF 10 bilateral leg pain of all kinds- burning, shooting, stabbing, pricking, sort of cramping-all this for about 6 months, but what has remained and is CONSTANT immediately upon standing, pain from hips down, to the touch too, also extreme aching/soreness, stiffness/tightness, heaviness/fatigue (as if you’ve been standing in one spot all day/ran a marathon as well as 24/7 twitching and bubbling-like feeling from hips down, ALL over legs, that seems to be exasperated by just standing, walking a bit or stretching in bed. Also have such pressure pain/ache/squeezing/flexed heaviness that when I lift leg to get off it for a sec, I can feel the blood and pressure dispersing again in feet. This last part seems like it is just what the act/pressure/weight of standing should be like? Twitch is least of the issues but is also very maddening. with all this, I’m in CONSTANT pain and maddening discomfort…Mentally/overall it seems I’ve become Catatonic? Disassociateve? like a 24/7 state of trauma/shock? not SURE of what is exactly happening/how to explain it, could be all these things listed.I CAN’T TAKE it.

there’s been NO DIAGNOSIS of any kind for ANY OF IT becuase the few tests they did for the physical problems were negative. Have seen multiple Dr’s/specialists that don’t know and push you away and don’t know what to do…I’ve said to them I don’t even want to wake up anymore…and they look at you and say “I don’t know what to say” or I don’tknow and walk away…Being in this constant torturous state and AWARE of it, b/c you’re not ‘dead’ causes extreme terror and sadness that I’ll always be like this…I wake screaming and moaning in terror and anguish. All I can do is lay down. And if I do something like go in the car or eat at table, I ‘look’ fine, but I can’t get back all this time

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Oh sweetgal I’m so sorry you are going through this. I wish I had answers for you, I hope someone here has the answer. I don’t know if you’ve sought out a chronic pain forum, they might have ideas on the physical issues, doctors or treatments even. They may also have help for the mental anguish of trying to get away from the pain.

Have you been referred to a pain management specialist yet?

My heart aches for you. I hope answers are just around the corner.

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Have you tried iodine, magnesium, B12 and D3? The tests for magnesium are useless so even if you were tested for magnesium deficiency it would have come back normal but a lot of the symptoms you described sound like it could be one or all of those things. I watched these videos recently and I’ve ordered a couple of these supplements to see if they will help with my pain. I have been in pain for the last 2 years and my Dr.s haven’t been able to diagnose me with anything. I don’t have any neuropathy though just bone and joint pain.

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My heart aches for you, too.

I’ve watched many videos by Dr. Ken Berry, the ones posted by @Firenza. I find him a good source of information.

The biggest physical ally any of us have is the power of our brain and the healing power of the body. I can’t imagine the level of pain and its unending nature you describe but there must be some medical practitioners who use some techniques that employ reasonable alternative therapies. I think connecting with a pain management community could help you identify some techniques to try.

Since you’re posting on this forum, I assume that diabetes is a part of your health status. Can you tell us more about your glucose management?

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You can always walk down to hospital and check in to the mental health unit for the weekend - 72 hours. See what they come up with. Worth a shot. Ask for a case worker or a patient advocate.

Do you have friends and family nearby? Speak with them. Make a plan in case things get worse. You or they can go down and speak with the local Police Department and tell them you think you are experiencing a crisis and you are worried about your safety and ability to care for yourself. If something goes very wrong, they have your name, address, and phone number and can check on you. Tell them that you are a diabetic.

Consider stopping in at one of the patient support groups though NAMI. They may know what is wrong. Ask them about resources. Tell them that you are scared and you don’t know what is wrong.

https://www.nami.org/Find-Support

You may need to work quickly before things get worse. You may only have a few days until things get worse and you loose the ability to function completely. Let us know what city your in and we will google for resources.

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I have been to psych unit for a week, last yr, my dad’s dr suggisted it…they didn’t help, just did bloodwork… saw a ‘neuropsychiatrist’ who just said i was ‘depressed’ and ‘you say ‘like’ a lot’ when i was trying to describe what’s wrong. I’m still the same as last yr and said to every dr I don’t weant/can’t live anymore like this. A recent psychologist said see a ‘neuropsychiatrist’ to get a more specific diagnosis of the other conditions, like catatonic, unfunctional, disassociative etc (which I had to come up with myself), but then all they say is ‘depressed’, which my PCP and fam know that’s not the case. The ER didn’t to admit me even tho my pcp told them to. A few dr’s won’t see me bc they said they can’t help. I’ve all but lost my ‘belief’ in God, which is also scary bc then I say if you lost belief, if you pray can you still get help? Some say yes and no. I know what would be an answer…If we could somehow be immortal, taht would solve everything.

Go to Nami. Go to the patient community. They will work with you.

thanks, have been to pain management and psyiatry and both said there’s not much they could do :(, and to try tai chi/stretches which i have. One pain dr said when i said I can’t TAKE it anymore can you help, he said ‘no all i do is shots in a small area like a joint, soo i’m gonna goo’…and got up and walked out. Will look at other forum thanks.

I recommend you go see the patient community in person, if possible. They need to talk to you. If nothing else, go to bipolar support. There will be people with a range of diagnoses who are super informed.

Those joint shots are very expensive, but they work for around 3 months. the skiers get them and swear by them. You could try one out if your up to it.

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oh I’m South of Boston Ma…dr’s won’t do the shots, no dr knows anything…I said with all physically/mentally/overall condiitons i don’t even want to/can’t live anymore…they just send you home

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Should be able to find a regular psych in that area for weekly or monthly visits.
In my area there are psychs who deal specifically with diabetics.
They are employed by the nephropathy clinics that deal with pain, but also have their own private practices on the side. They aren’t gonna prescribe drugs for physical ailments, but at least they will be familiar with that stuff.

You might start there. Hit it hard. Go once a week for a couple months so they get to know you. They still might not do anything, but at least you tried your best. After a few months, maybe more will be understood and it will be easier to branch out into the physical medicine part. Thats gonna be tricky.

https://dbsaboston.netfirms.com/

https://namimass.org/nami-peer-to-peer/

https://namimass.org/nami-mass-compass-helpline/

I feel for you, too. Not sure I can help, but I do have some questions which might lead somewhere…also might not.

Do you remember how this all started, SweetGal? Have you had depression in the past and, if so, what type?

Do you remember when and how the pain started? Was it as bad as it is now, or did it start out slowly and then accelerate?

Had you, perhaps, had some sort of triggering event before this all started? Physical or mental, such as the flu or a bout with pneumonia, or a death of someone close to you?

Please post back when you can…I think I can speak for the rest of us when I say we are concerned and would like to help you figure this out, if possible.

Saw a neurologist today,(had already seen a few) said it’s just ‘something that’s happening’ and I’ll have to live with it, even though I said I Can’t. Said I’m depressed… It’s torture and I’m prob depressed ABOUT what’s happening physically and the other conditions i listed, like catatonic, almost like a comatose, not sure what I can/can’t do even min- min, shock./trauma etc…some of this prob from physical issues. Dr also said if no ‘findings’ on tests, then it’s prob psychological and other psychological issues are exaggerating it. :frowning: I DON’T think that’s the case as before all this like 2 yrs ago andbefore I recall being ok? I don’t even remember it’s been so long since 2+ yrs ago all the way back to my whole life before this that I forget what it was like and I’m certainly not IN it. No big events in life before this, no diagnosed depression. It’s just so many things wrong now, a psychologist said it’ll be hard to weed it out, it’s just a permanent change. I don’t even want to /can’t live anymore , but then I know Immortality would solve everything

Have you seen a rheumatologist? Some of what you’ve experienced sounds like it could possibly be either fibromyalgia or chronic fatigue syndrome, and more likely fibromyalgia. Fibromyalgia definitely causes pain and fatigue, and depression can follow that due to the physical distress, but isn’t usually a cause of the distress. Chronic fatigue syndrome doesn’t always exhibit that much pain, but certainly the fatigue.

Fibromylgia can be diagnosed by a rheumatologist, but check first in your area to find one who treats fibro. There are still some old-fashioned rheumys who don’t believe in it, although more recent studies are confirming that it does exist and is not all in your mind. In fact, they now think that it’s some sort of central nervous system disorder.

Ironically, the best thing for fibromyalgia is exercise, but you have to start out REAL slowly…like even 5 minutes a day! And it takes about 2-3 months before you start feeling better (with gradually increasing the aerobic exercise.) Took me almost a month to work up to a half hour a day but, once I did, the change was amazing.

So, not saying that’s what you have, but it could be, and it would take a rheumatologist to diagnose it. I hope you can find a good one and, frankly, I hope it IS fibromyalgia, because at least it’s something you can deal with once you know…and not knowing and feeling that crappy is the worst.

I have Rheumatoid Arthritis. It usually affects hands elbows, basically whole body and can be so painful you can barely move or even be touched.

Medication is the key to this first. After diagnosis.

Not sure this is the problem here but I am no expert.

Could be fibromyalgia which I do not have and do not know enough about.

I wish I could help.

Can you find a fibromyalgia specialist in your area? Try at a teaching hospital first. If not I would recommend seeing a rheumatologist.

In the meantime my sister, who has extreme pain in her legs, speaks highly of the product MyoMend.

If they (and you) believe theirs a psych element here, then you can start by addressing that. You may need to commit to seeing someone once a week. It can take months to get in, so you may need to schedule and then go talk to the patient community in the meantime. Once per week. Let us know how it goes.

It won’t help to address the psych element if it’s the pain and fatigue and living that way that is causing the psychological distress.

It took me nearly three years to get a diagnosis but then…I was extremely lucky to have already been in treatment for depression and had stayed with both my psychologist and psychiatrist. When they both said there was absolutely NO evidence that I was still depressed, and that they both believed it was physical, I started researching and found some info in the Harvard Health letter describing fibromyalgia (FM, for short). And, luckily, one of the leading researchers in the country into FM is in my area. Unfortunately, he’s also a jerk, but I did get a diagnosis and then found a better and more sympathetic rheumatologist.

Sweet Gal…it may not be FM but, if it is, there’s a lot of hope, and you definitely can get much better. There’s no blood work that can diagnose it (other than to eliminate other causes) but most rheumatologists nowadays are trained to administer the tender point exam. And, since the points are so very specific, you can’t fake the test, which is good. Get thee to a rheumy and hope like hell this IS fm, because it’s definitely treatable (and the depression would probably start to go away just from getting a diagnosis!)

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It instantly upon standing and permanent, and doesn’t come and go, is every SECOND imagine like if you ran 50 miles, then stood on your feet in ONE spot all day for 24 hrs, like SOO much excruciating pressure, pain ALL over like squeezing, aching, heavy, stiff, fatigued like if you did 10000 lunges and lifting your leg or just STANDING would be not normal or ok and you’ll just collapse. All blood tests, emg and mri negative. The rheumo dr didn’t say fibro, no pain in neck etc…no dr knows anything and my therapist doesn’t know how to diagnose any other condition i’m trying to get figured out and just says ‘yea you’re depressed from pain’, but it’s more than that. Sry for the novel here, thnx for everyones replies