Strange Medical Malady! Has This Ever Happened To You?

If no one minds, I will tell this in story form, although it is a true event. And one that I have had to deal with for almost four years now. If this is in wrong place, I'll be glad for mods to move it. Didn't know where else to put it. I don't usually like airing 'my laundry' so to speak, but if it will help me to get some answers, so be it. I can't think I'm the only person that this has ever happened to. So, here goes:
One afternoon I laid down in my room for a nap. I slept way longer than I intended, but the most horrific pain imaginable awoke me. I was screaming my head off! I've been told that I have a very high threshold for pain, but this was relentless. My husband at the time, was outdoors, and heard my screams. He ran inside to see what was the matter. My left arm was swollen so badly that I could barely see the rings on my fingers. To fill in the gap here a bit, I awoke on my right side. So, I know I didn't sleep on it wrong.
To save time on waiting for an ambulance, my husband drove me in our car. Once there they had to cut the rings off my fingers. They x-rayed me and nothing showed up as broken. So, they gave me pain pills and sent me home, telling me to follow up with regular MD if symptoms persisted. Well they did, and I did.
I've been to countless doctors, neurologists, and chiropractors and had all kinds of tests run, and still nothing. If it was just a swollen arm, I would just give up and say, "To heck with it!" But what I didn't notice right away, was that my whole left side was pulled out as well. I wasn't born this way. There was purple and black bruising that stayed under my armpit for nearly a year. I had very limited mobility. And the pain has never stopped, It has been going on for nearly four years now. and I don't know any more now than I did then.
If you look at me straight on, you can see that one shoulder is elevated higher than the other. And on my sides, the right side has a natural curve and the left side is straight up and down. I'll say again, "I wasn't born this way." I once had an hour glass figure on both sides. I don't look like a freak of nature or anything, but it's frustrating. And if nothing else, I'd like to be pain-free again. It feels like someone opened a place at the upper part of my arm and started pouring scalding liquid, non-stop for 4 years. I quit the pain pills after the first script, because they did nothing for me and I'm scared of addiction. At one point I was so overcome with the pain, that I tried to take my life. But I will not do that again. I'd rather try to find some answers. I read somewhere on here that ATS will not allow anyone to make fun of you, so please don't do that. I am seriously looking for some real help. I went to the usual places first. I got nowhere.

reply to post by janasstar


Since I can't edit my thread post, I meant to say orthopaedists instead of chiropractor. I've been thinking that maybe I should see a chiropractor, but my insurance won't cover chiropractors.
I may be losing my mind at this point, but I've considered everything from the paranormal to little green men, since nothing else has panned out. And I'm no stranger to either.

EDIT: Something tells me I better clarify that statement. No, I haven't seen little green men. Just an expression. But I have seen ufo's on
several occassions, and was not the only witness. Have experienced the paranormal in the sense that it is yet to be explained. (Haunted House)

[edit on 8/30/2007 by janasstar]

[edit on 8/30/2007 by janasstar]

[edit on 8/30/2007 by janasstar]

I did some checking on the internet and the only thing that I have found that might match your symptoms is something called lymphedema

Typically, it is a swelling that can occur, most typically in the arms and legs, anywhere on the body including torso. The thing is that this is something that usually happens to people who have had cancer and who have undergone radiation therapy. It's a reaction by the lymphatic system to radiation.

From your post, you don't mention having had cancer so I have to wonder whether you might have been exposed to some source of radiation?

Anyway, I can't help but think that this problem you are experiencing has something to do with your lymphatic system. You noted that there was bruising in your armpits and unexplained swelling. Since the armpits contain a number of lymph nodes and that swelling of the limbs, it might be possible that this is an indication of some sort of disorder involving this particular area.

I don't know for certain of course, and I'm not a physician, but it may be worth investigation nonetheless.

Wow, that sound like an ordeal.

I also suffer from almost constant pain, though over the years it has not increased. Usually it's about a level 3 or 4 and often drops done to below 1 on a pain scale of 1-10. (from sciatica)

Have you looked up 'Fibromyalgia' in Wiki? It sometimes seems to be a 'catch-all' term that doctors use, but it's a place to start.

Usually when you have something affect one side of your body the first though it some kind of 'contact' inflammation, such as laying on one side on a wool blanket and being allergic to 'wool'. But I've not heard of this.

Had you any kind of traumatic event or injury to the neck, spine or lower back? Any kind of odd change in diet? Maybe accidently ingested a poison? (just brainstorming a little).

Edit: just read the poster above and yes lymphatic system involvement sounds correct to me. (I'm not an MD).

Good luck with your quest!

[edit on 30-8-2007 by Badge01]

reply to post by benevolent tyrant


Thanks mod, but that was looked into at one point. But the radiation thing wasn't. Although, I don't know where I could have been exposed to radiation.

[edit on 8/30/2007 by janasstar]

reply to post by Badge01


Yes I have looked into fibromyalgia, not because of this, but because of something else that was going on that was related to a tick bite. Although some of it does bear a close resemblance, not all of it does, and it's sudden piercing onset. It was like a traumatic injury, that never healed.

[edit on 8/30/2007 by janasstar]

Originally posted by janasstar
I'm not willing to be jeered at for my suspicions

I don't think that anyone wants to be jeered or made fun of in any way. You are posing a sincere question and you should expect to receive sincere replies.

If you encounter any sort of mocking, jeering or anything in that vein, please don't hesitate to contact any one of the mods assigned to this forum.

reply to post by benevolent tyrant


I guess what I'm getting at is that everything that medical science has, has been ruled out. Sleeping peacefully in my bed couldn't have brought on the kind of traumatic injury that would account for the damage done to my arm. My pain scale stays between a 8-10 range. I constantly have to bury myself in pc activities or spider solitaire to keep from losing my mind.


[edit on 8/30/2007 by janasstar]

reply to post by janasstar


forgive me for thinking out loud, but does anyone know if this sounds like some type of arthritis. If so, would it have been discovered by the type of tests run? I'll think back and try to remember all the tests. I know, there were all types of blood tests (both venous and arterial), MRI and X-ray. In response to the mod's suggestion about radiation; does anyone know anything about radiation and it's symptoms? I know I read about it once, and the little I can recall, seems like there was intense burning, but that the skin had reddish appearance. I'm unable to do searches at the moment because of pc probs, but, that's what I recall.
My skin never turned red. Other than being purple and black under the armpit, it had a purplish bulbous appearance to the upper arm. between the elbow and shoulder. The veins criss-crossed almost like when you stand too close to one of those electric heaters and get burned. That stayed that way for over a year. And if I tried to use it to any extent, it developed something the doctors called....it's not atrophy like when a muscle deteriorates from lack of use, it's... I think it's called hypertrophy. Forgive me if that's incorrect, it's been too long. The only thing that has stayed constant, was the pain, and my side being pulled out of shape, and my left shoulder being elevated.
Forgive if I'm rambling, but I want to be as clear as possible, so that maybe I can get clear answers.

Have you had a Bonescan? That may be a bit expensive, but if there are problems with deterioration or bone loss, it would be good to know.

Might be a good idea not to rule out a lymphatic problem too quickly. The inflammation on one side of the body really seems to match the lymph system circulation. Doesn't mean you had to have irradiation.

Only other thing I can think of is a pinched nerve with the pain radiating out to the plexus in the armpit.

You certainly have my sympathy. I kinda know what it's like, b/c my sciatica was about an 8 on the pain scale for a while, but fortunately it's manageable and I don't even have to take Aleve anymore. But being a 9 or 10 must be pure hell.

Edit: Just noticed your other comment. If your shoulder is elevated, it should be possible to isolate the root cause for that. A postural analysis, and maybe an EMG might be indicated. Maybe you hurt your neck and the muscle is seized up. An EMG is painful (I'm told) but it can be a good diagnostic tool (Electro-Myogram).

Just an additional thought.


[edit on 30-8-2007 by Badge01]

reply to post by Badge01


I have had the MRI, and have pretty much given up on drs. Unless I can get some new ideas. That's why I'm here. I'm just about at my rope's end. I have a high tolerance, but sometimes it gets to me. Good thing I have a sense of humor.

reply to post by janasstar


Right I messed up and posted over top of you just now. I added a couple things.

As I tried to add above, if your shoulder is elevated, there has to be a reason for that and it's either muscular or a result of a pinched nerve.

But the MRI should have shown this if read by a competent MD.

What about a postural analysis? That's a check to see if your pelvis, shoulder girdle, spine and legs are aligned correctly?




[edit on 30-8-2007 by Badge01]

reply to post by Badge01


You have some very good suggestions btw. I do have degenerative bone disease, but seems unrelated to arm prob. And yes those EMG's are Painful! Had one, but not for this issue. Wouldn't hurt to get these checked into if I can get a dr to approve need for them. Thanx

[edit on 8/30/2007 by janasstar]

Well, I hesitate to mention this, but have you gone to a physical therapist?

Ever considered doing some mild exercises in a pool?

I know it's kind of cruel sounding to suggest exercise if you're in pain, so I apologize in advance.

I must say, though that this is what helped me. If you don't have some exercise I fear things tend to get worse before they get better.

reply to post by Badge01


what kind of dr does postural analysis?

reply to post by Badge01


The only therapy I am allowed to do is in a pool. But not so much for my arm. If I do too much with it, it hypertrophies. The only exercises I can do with it is to make circular rotating movements to keep my arm from freezing up again. I can feel my shoulder cracking when I do these, but that might be from when I let it freeze up from inactivity that time. I had frozen shoulder impingement. This was after the other onset. I was in so much pain i dreaded moving my arm. Now I force myself.

Hm…
My first thought is blood clot, but I don’t think you would still be in pain 4 years later from that. It does fit the initial swelling, pain, and bruising though. I did a search on your symptoms and the best match I could find was on Medhelps site. The second post the Doctor lists several things which the OP could be experiencing. I recommend that you join over there and post your question, I think that the number of medical people at that site should be able to trace down what you are experiencing.

MedHelp.com
Hope that helps you some.

reply to post by defcon5


Thanks, I just might be able to do that when I get my pc probs cleared up. I feel blessed that I haven't been bumped off ATS in the last few hours. I'll try that before going to bed. And I'll know I'm through with my 'lifeline' here. Thank you for your help. Jana

Oh, the other thing I think I should mention based on your last couple of posts is that the two things may not even be related. What happened then, and what you are experiencing now may not be the same thing, or what happened then might have aggravated something totally unrelated. You did say that you have some problems with your bones; maybe the pain is from a disk slippage or pinched nerve that was aggravated by the swelling. I would not give up on the doctors though, sometimes when you get overlapping issues like that it is extremely hard for them to diagnose.

Originally posted by janasstar
reply to post by Badge01

 

what kind of dr does postural analysis?

What I did was use my regular doctor and ask him to suggest a chiropractor, but not the 'flakey' kind. They have machines and stuff that can measure you if you get the right person, and can tell you where you have tilting and curving and soforth.

Though they sometimes try to scam people by selling them orthotics (custom lifts in the shoes), it's also true that an imbalance or misalignment in one area can cause the body to overcompensate and then it hurts in the other area.

I mention this only because your shoulder is raised up.

The best thing to do now is probably as was suggested above to go to a medical forum and see if you can get help over there, because it's becoming clear to me that you have a multitude of problems overlaying the other basic acute pain problem. (frozen shoulder, bone degen, etc.)

It may be that this is what is mystifying the other doctors. Almost seems like you need a team of specialists to diagnose you and then consult with each other. I realize that's impractical for the most part, but a forum approach may help. Just be sure you don't leave anything out.


[edit on 30-8-2007 by Badge01]