Discussions By Condition: Muscle conditions

pain 12+ years - Nerve & Arthritis type pain, maybe fibromyalgia?

Posted In: Muscle conditions 3 Replies
  • Posted By: Anonymous
  • June 8, 2007
  • 04:36 AM

I'm currently 27, Female, non-smoker, very light drinker, never been pregnant. Grew up in PA, now live in the South (I know some regions are more prone to certain conditions, which is why I mention this)... Used to always have low blood-pressure. In the last year or two, have shown signs of early hypertension, but not high blood pressure. Was thin & muscular growing up... Didn't really start to gain any significant weight till I was 19 or 20, but am now overweight by probably 80 pounds.

The earliest unusual joint type pain I can remember was when I was 14 (at my fittest). I have flat feet, and was out at a friend's house playing basketball, barefoot, for a few hours. (stupid move on my part, but I was young and not thinking). That night when I came home, I felt fine. I sat down on the sofa for an hour or so to watch TV... When I went to stand up, I collapsed. My legs just completely gave out. I wasn't in any sort of pain before then, so I'm not sure why it happened. Soon thereafter, I started getting pain in all of my joints. My shoulders, knees, wrists, ankles... pretty much everywhere. And not just in the joints, but also radiating in my limbs. I believe it was later that summer (still 14) that I was working at my first job (a fast food joint) and wound up giving myself 2nd degree burns due to a joint giving out. I went to pick up a fry basket and flip it over, to dump it out, when my shoulder gave out and my arm just collapsed. Along with it, the basket, which fell on my other arm. This was the 2nd time a joint of mine gave out w/o warning.

During the rest of my school years, I continued to have joint pain and at one point, apparently even had sleep paralysis. I recall waking up, but being completely unable to move. My eyes were open, but I couldn't talk or move anything. My family just thought I didn't want to wake up. Pretty scary at any age, but especially as a teenager. Eventually, I convinced my family to take me to the Dr. for both my knee pain, and for my overall joint pain. I had numerous arthritis tests done and they all came out negative (I believe the dr. said the traces of it were so scarse, that he couldn't actually say I had it) and regarding my knee, another Dr put his thumbs above my kneecap, pushed down hard, and asked me to make a muscle. My kneecap slid somewhat over his fingers, and caused intense pain. I'm sure he just felt I was a kid trying to get attention, as he claimed I was having growing pains and was out of shape. I was most definitely NOT out of shape at this point in my life.

I should also note that Rheumatoid arthritis runs in my family. My grandmother has had Rheumatoid arthritis since she was a pre-teen. She's now in her 80s.

As I've gotten older, the pain has never gone away. It's actually gotten worse, and occurs regularly. I was recently in a car accident and had to have x-rays and MRIs done. The X-ray didn't show anything, but the MRI of my lumbar region showed I had 3 ruptured discs and a bulging disc in the last for vertibre/discs in my back. I continuously have pain in my back, butt, and down my legs both in the front and back, sometimes down to my feet, sometimes shooting pain, sometimes burning.

A list of my current regular symptoms:

physical fatigue, irritable bowel syndrome, genitourinary symptoms, morning stiffness, trouble concentrating, neck pain, joint pain, joint popping out of place in shoulders - sometimes with subtle crunching sound, radiating limb pain, eye pain, sinus pain, chronic headaches which vary from back of the neck and lower head to central spots in the top of my head (usually sharp stabbing pains), to "headaches" just in my sinus', TMJ/TMD, sleep apnea, constantly tired (whether I have 5 hours, 9 hours, or 15 hours, I feel the same). Occasionally get shooting/stabbing pains in my armpit/side breast area; occasional kidney area pain in back.

I've noticed small lumps on the backs of my heels (look like fatty lumps, but no explaniation for them). Feet/ankles swell/feel stiff/puffy... And one thing that I have no explaniation for -- I frequently get sharp shooting pains in my feet and up into my calf upon "landing" my feet on the ground. It could be a 2-3 ft height off the ground and "jumping down", or it could be something as simple as putting my feet on the floor when getting out of the car. I'll usually feel the pain in my instep and heel first. It's much worse than normal arthritic pain, and feels like it's coming from my bones. The only similar intensity pain I get is (occasionally) when sneezing: I'll get pain in my neck and arms, which also feels like it's deep in my bones. Almost always have very tight, tense muscles; occasionally have sudden leg spasms/jerks while sleeping, or resting but close to sleep; what I believe are called "low-grade" fevers (95 degrees instead of 98.5), also developed a mild type of bronchial asthma which causes spasms of the bronchial muscles upon excessive laughter or crying. No other type of Asthma, and normal Asthma medication won't relieve it. Dr. feels it was a result of a long bout with bronchitis.

Symptoms come and go in intensity, and are usually worse with cold or wet weather, and in times of stress.

So while a lot of my symptoms resemble Fibromyalgia, I tried pressing on the diagnostic pressure points (neck, front of chest, and arms/elbows) and felt no pain. I've read that typically, Dr's look for pain in 11 of the 18 pressure points.

Oh, also, the only other diseases that I know of, that run in my family (that could possibly be genetic) are Cancer and MS. My dad's brother has MS, and probably 3/5 of my family has had cancer.

Any ideas would be extremely helpful, as I've been looking for answers for many many years, and am tired of living in pain. I plan to go back to the Dr soon to have numeroust tests done.

Thanks for reading all of that!

- Dawn

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3 Replies:

  • Hi Dawn, I’ll go for my favourite and ask if you have been tested for Ehlers Danlos Syndrome? (Check my profile for the EDS website for more info). Ehlers Danlos syndrome is a connective tissue disorder that causes lax muscles and sometimes-internal organs to be lax. 1: Low blood pressure is extremely common in EDS due to lax and weak veins though it is known for this to change to high BP in some. 2: Many people with EDS are very thin and usually tall though this is not always the norm. Some find it hard to gain weight usually in the early years of life.3: Joint pain first felt at around 14 is common in a female tends to be due to a surge in hormones from puberty causing fast growth spurts and excess laxity which can be harsh on the EDS body. 4: Flat feet are incredibly common factor in EDS as is plantar fasciitis the heel pain you mentioned. 5: Joints just "giving out" is a common thing in EDS. This is known as subluxing - in English it is partial dislocations - the joint is slipping slightly out of the socket - sometimes it will pop right back in of it's own accord and other times it needs help to be popped back in. At times it will pop out with a loud audible crack and other times it will just slip out silently and these are when you have no warning that your joint has popped out of place and you will stumble and fall or drop something such as a heavy pan. To the average person they would believe a dislocation would need hospital treatment, but a partial one does not because they can be so slight they are only noticeable to the person who has them. I said for years pre diagnosis it felt like my hips were slipping slightly out of their sockets yet doctors said it was impossibly now I know it isn't. 6: Wandering kneecaps is a well-discussed problem with people with EDS. Majority of us have knees that bend backwards (Think of a camel and how their knees do not lock when straight that is how EDS people's knees are) though some of us can lock the knees they just have kneecaps that like to roam around the knee due to severe laxness. Doctors have a habit of trying to see how stable they are and pushing the knee out of position and we end up with a knee cap living on the wrong side of our leg until we can relocate it again. 7: The problem with EDS is it does not show up on X-rays or MRI scans or even blood tests though there are a few tests such as Skin biopsy * Heart ultrasound. To check for mitral valve prolapse. If you went to see a geneticist a Genetic tests as there are a few tests that can detect certain collagen gene alterations through DNA analysis. 8: I've noticed small lumps on the backs of my heels (look like fatty lumps, but no explanation for them) That sounds like molluscoid pseudotumors -small spongy tumours found over scars and pressure points which consist of fat surrounded by a fibrous capsule. Nothing to worry about just another irritation. 9: I frequently get sharp shooting pains in my feet and up into my calf upon "landing" my feet on the ground. It could be a 2-3 ft height off the ground and "jumping down", or it could be something as simple as putting my feet on the floor when getting out of the car. I'll usually feel the pain in my instep and heel first. It's much worse than normal arthritic pain, and feels like it's coming from my bones.That is the joys of having flat feet dear. Even if you do not get a diagnosis by the end of the week the next thing you need to do is get help with your flat feet ASAP. They are the cause of so much pain it is unbelievable. Get in touch with a podiatrist and get them to make you up a pair of custom made insoles. Having flat feet makes you walk wrong putting pressure on your legs, hips, back, neck and ultimately your head causing all sorts of pain. It won't cure all your pain, but it may lessen it. At first wearing insoles may cause problems because you are used to walking feet flat to the floor, but after getting used to wearing them (1 hour a day to start) things will get better when your Musculoskeletal system adjusts. Well that's that for my favourite subject sure someone will be along son and ask if you have been bitten by a tick. :D
    Anonymous 42789 Replies Flag this Response
  • MAny of the symptoms could be from the back problems. Something could have moved and is pushing on a nerve. Living on the east coast, could it be possible you had a tick bite long ago and could have Lyme disease? I was undx'd for 20 yrs and have felt much like you. Hope you find out something soon.
    Anonymous 42789 Replies Flag this Response
  • Told you someone had to ask about a tick bite :)
    Anonymous 42789 Replies Flag this Response
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