crazy pain I don't know how to explain

[Echo]

I have a question about chronic pain. … Especially since today was so bad I just wanted to cry and slam my body into a wall :0

I have specific pain in my hip, knee, back, head etc. (Normal pains)

But I also have these different variations of pain and intensity throughout my body that comes in waves. It’s I’m my forearms, my hands, the back if my head then switches into my thighs or back etc. It’s friggen all over and moves. It’s achey, numby annoying and intense like it just needs to be squeezed super hard or pulverized so it will stop. (I feel like I just need to workout super hard, tensing up the muscles and pumping them up to relieve this type of pain) Other times it’s like being stabbed by pins and having shards of glass rubbed into my skin.
It’s not the regular tendon pain or muscle pain spasms. It’s intense and makes me wanna scream and hit something (sorry I don’t sound so pretty right now just don’t know how to explain it)

How do you explain this to a doctor that asks what number it is or what type (shooting, stabbing etc)
I can’t figure out what I’m feeling and the sensations of this pain is literally wanting to be slammed into a wall or squeezed until I pop.

What is it?
Does anyone else get this?
It’s driving me crazy. Seriously driving me mental when it’s there. It feels like it’s affecting my brain and makes me frustrated and like I want to be aggressive. (I’m not, don’t worry)
I can’t even think correctly to get the smallest thing accomplished.

Any suggestions or recommendations when this just comes on all of a sudden and pills don’t seem to do the trick.
(The docs think I’m bs’ing them) (I admit this sounds fake or even crazy but it disturbing to my being)

Thanks y’all
Does anyone feel these sensations

[Mog the Dog]

Hi Echo,

Sorry to hear that you are experiencing this new sort of pain. Sounds more like neuropathic than musculoskeletal pain to me based on your description, but a pain specialist would be the one to know for sure.

If the doctors you are currently seeing won’t take you seriously then it is time to find a new doctor. I know, easier said than done sometimes, but it is important that you avoid being harmed more than helped when you visit a doctor.

There are some recent scholarly articles available online that address the incidence of neuropathic pain in EDS that might be helpful in your quest for answers.

MTD

[Dr. Diana]

Hi Echo and Mog the Dog, Like many of us, I also had weird pain that defied explanation (and traditional pain relief). It was a secondary response to infection and this is not something that doctors recognize as today. Sadly, pain specialists only have so much in their arsenal to give us and for me, NOTHING worked. I do think that we need new vocabulary to explain some of these weird pain symptoms, as you suggested Echo. My pain was not neuropathic, not in the muscle or the bone, and it seemed to travel around… really weird, right? I’m working with some doctors now to encourage them to think creatively 😉 — I believe it’s essential for us all. Although I’m not giving you answers, sometimes it helps to know you are not alone, and many of us are trying to gut out these weird symptoms. We are all here for you! 🙂

[Barbara]

Hi Echo,
Reading your post reminded me of the weird pains I had in my foot, at one time. I think it was to do with a malfunctioning autonomic system.

To describe it, my right leg started misbehaving way back in 2004, it hurt a lot, was weak and when I stood, it felt like standing on shards of broken glass under the ‘instep’. I could manage to walk, in a fashion, on the outer edge of my foot, with the aid of a stick to help support and balance me but only for short distances, as the general leg pain would soon come on. Also, when I walked, if my big toe on that foot made contact with the floor, it would trigger irregular heartbeats – weird or what?!! – but happened every time.

Upon testing, with the needles they insert into your muscle (among other tests) they determined I had Small-fibre Neuropathy and also a mild right leg Radiculopathy. I determined my own method of treatment – the ‘use it or lose it’ method! Thank goodness that it’s all back to near normal now.

Before I suffered my head and neck injury, I would never have believed there were so many different types of pain – the descriptions could fill a book! I’d had the odd toothache, or sprain, some tummy issues and the pains of childbirth but NOTHING compared to all this.

I think that’s part of the trouble, non-sufferers just cannot comprehend it. Lets face it, the ‘pain-screening methods’ have been designed by non-sufferers, a bit like the ‘manual muscle-measurement methods’, which are again totally inadequate to assess and capture the level of functionality, in most of us suffering muscle issues.

In case it’s a deficiency, have you tried Magnesium baths (or Sea Salt baths, or indeed Bicarb and Vit C baths – basically found in ‘bath bombs’) ?
Regards
Barbara
(UK)

[Mog the Dog]

Mog the Dog here. Yep, we do need to create a new vocabulary for all the weird feelings and unusual pain.

I was just telling a friend this the other day when I had trouble describing the weird head symptoms I have been having. I knew he could totally relate to my experience if I told him my finger hurt because I just touched the hot stove, but I had no words to describe the hellish nightmare I experienced during the weird seizure-like head episode. The best I could do was tell him that if I could create the same episode inside his head, his jaw would drop and his mind would be stuck on, “You have got to be kidding me! How is it possible to feel this bad in such a weird way!”

Speaking of pain and weird, I used to have excruciating joint pain in the hips and shoulders that would only hit in the middle of cold nights. It would start when I would wake up and move the joint and last for about 30 seconds or so. In my final month of pregnancy, it happened 5-6 times per night in my hips and was so intense that I could not talk through it. It was worse than the labor pains I had and the pain following separation of my pubis symphysis when giving birth.

This weird hip and shoulder pain on cold nights completely went away when I went on Plavix and aspirin and comes back when I go off of these medications. Weird.

MTD

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