Saturday, September 26, 2009

Odd Symptoms

I have had fibromyalgia for many years now. I have been diagnosed for about 11 years, but suffered with it much, much longer. In addition to fibro I also have Ankylosing Spondylosis, IBS, PolyCystic Ovarian Syndrome, Sjrogens, Osteoarthritis, Migraine and Cluster headaches and God only knows what else!
Despite all of my diagnoses I still have symptoms that no one can seem to explain to me. The doctors tend to look at me like I'm crazy, so I've stopped mentioning them! I just wonder if other people with fibro have any of these same symptoms. Or even if there could be another diagnosis lurking out there?
I'm just going to list some of these weird symptoms and, frankly, wait to see if anyone responds.

Here goes:

1. Swelling of the hands and feet. Sometimes extreme swelling. I can't even make a fist with my hand. My fingers look like Miss Piggy! And very often one hand or foot is larger than the other. NOT always the left either.

2. Sudden Deafness and then Ringing in the ear. Usually just one ear, but occasionally this will occur in both ears at the same time. It starts with the deafness , then the ringing tone. It lasts between 20 seconds and 2 minutes. Then it's gone with nothing to show for it.

3. Extreme chest pain. More middle to left sided. It literally feels like I'm having a heart attack. However, my blood pressure and other vitals are perfect. This can last for hours at a time for days on end and then suddenly disappear. Sometimes however I'm left with the feeling of tenderness, as if my chest has been bruised from the inside out.

4. Complete numbness of my hands and arms, followed by tingling. I wake up like this every morning. If I sit with my arms resting for any period of time it will also occur. I am contributing this one to carpal and cubital tunnel syndrome. However , I am still baffled because I've already had the surgical release and nerve transposition done in the right arm and now I'm having these symptoms again??

5. Metal headaches. I name them so because I will get a strong metallic taste in my mouth when I experience one of these headaches. It is very severe, yet is not a migraine. Or at least not my usual ones. This can last from 2 to 12 hours. Pain medication will ease the headache a bit, not a lot, but nothing takes away the metallic taste.

6. Mid-thoracic back pain and tenderness. It feels much like the pain you experience in your back when you have a kidney infection, but it is located much higher on the back than the area of the kidneys. It actually is so sore that the entire area feels like it's bruised, but it is not. This does NOT go away, EVER. No pain medication or muscle relaxer has ever helped this pain.

7. Gnawing stomach pain that hurts from the front of my stomach all the way through to my back bone. NOTHING helps this except total submersion in heat. I have slept many a night in the bathtub with scalding water because it was the only way I could find any relief and the pain was so great that once I did find relief, I immediately fell asleep from pain exhaustion.

8. Sharp, burning, piercing, stabbing, throbbing, pin-pointed pain in various parts of my body. This is extremely painful. An 11 on a scale of 1 to 10. It stops you in your tracks. It can last for a couple of hours, but comes and goes in spurts of seconds at a time. There are no visible signs of any distress on the body part. This can be in a hand, foot, joint(ankle, etc..), breast, even my head. You can't walk on it, hold anything, put pressure on it.........NO USE of the effected area because the pain is so intense. It literally takes your breath away.

9. Pain in the bottom of my feet, as if they are severely bruised, yet they are not bruised at all. I literally cannot walk on my feet. I have resorted to walking on the sides of my feet when this pain strikes and it is occurring more & more frequently. This can last from hours to days at a time.

10. Swollen and sore lymph nodes/glands in my throat, causing sore throat and ear aches. This can last several days to a week at a time. Yet I don't have a cold or any type of congestion symptoms.

11. Twitching of my eyes. The eyelid will literally jerk or twitch. There is no pain associated with this, but I have noticed some blurred vision. Not sure if they are connected or not. This can go on for hours at a time.

12. Sensitivity to touch/feeling. I don't mean that I am sensitive for someone to touch me (although I am!!). What I mean this time is feeling textures. A rough woven piece of cloth, yarn, egg crate mattress pads........basically ANYTHING that is not smooth. It causes me the same irritation that some people experience when running fingernails down a chalkboard. This is an ever present irritation for me.

13. Hiccups! More and more lately I have been getting the hiccups and they are becoming harder and harder to get rid of. In fact, the only thing that works is for me is to completely hold my breath for 20 seconds and then exhale through my nose. Some days I get them 6 or 7 times in a day and they will continue until I do this breathing exercise.

14. Irritated and stuffy nose. This used to just been 1st thing in the morning or after I'd been lying down for several hours, but now it is constant. I can just barely breathe through my nose now. I don't have a cold and after a very painful series of allergy testings, I am declared to be allergy free! So what's the deal?

15. Bruising on my body, without me having hit or hurt it in any way. There is a possibility that I could hit it without knowing it and not notice the pain because I'm already in so much pain + on pain meds, or that I just forgot that I hurt it. But I really don't think either of these are true in my case. This happens at least once a week for me, probably more because I don't look at the back of my body very often.

16. Jerking in my sleep, or as I'm going to sleep. The doctors have diagnosed this as Restless Leg Syndrome. and this may very well be it because I don't know much about this ailment. However, it's not JUST my legs that jerk. It's my entire body.........ESPECIALLY my head. It will jerk from side to side, even when I'm not going to sleep. If I just get still and restful, my head will start jerking. I do get a kind of "irritated" feeling before it jerks sometimes, but often I have NO warning. This is both frightening and embarrassing.

17. Extremely dry, flaky skin all over my body. It does not itch. But if I do scratch it, I get white "ashy" marks where I scratched. Lotion does not help it very much either.

18. Dry, crusty , flat mole type patches of skin on my body. Usually brownish in color. These are generally small, 1/2 - 1 inch in diameter, but DO itch. And if scratched, they DO bleed. These do not come & go. They stay.......forever!

19. A very high illness/infection ratio. I stay sick! I have either a virus, sinus infection or bronchitis at least every 3 months. Usually more frequently. And once I'm sick, it takes me a while to get over it. Sometimes I have to take 3-4 rounds of different antibiotics before I get well.

20. Unusual cravings for food. And NO I'm not pregnant! I have dealt with these cravings since I was a little girl. In fact, I usually eat daily based on what I am craving. For example, one day last week I was dying for some sauerkraut. I haven't eaten the stuff in about 20 years! I crave beef before and during my cycle each month. And I crave lettuce or salads when I think I'm dehydrated. Many times it's weird stuff......like dill pickles & ketchup or vanilla soft serve w/french fries.

I have more weird symptoms than just these 20, but for sake of time I did not list everything. I realize I'm probably a freak! If you have an answer or suggestion about any of these, or if you deal with any of these yourself, please feel free to post or comment. Also, if you have any weird symptoms of your own, please list them also. It is my hope that I will find out that I'm not totally alone!!! LOL But also to find a reason or put a diagnosis with the dilemma!

Gentle Hugs to you all xxxxx
Teresa

6 comments:

Trisha Pearson said...

I've been hoping someone would post something like this because I have some odd symptoms too and wondered if any of them were a fibro thing. Let me see if I can answer without taking up too much space.

#1,5,7,14,17,18,19 & 20 - I don't think I've experienced any of these. But I've read about the metal headache being associated with fibro.

#2 sudden deafness and ringing of the ear/s- I occasionally have short spurts of this, lasting about 10-15 seconds.

#3 Chest Pain - I've never had this but a lady I know did and the chest pain is what she went to the doctor for when she ended up with the fibro diagnosis.

#4 Numbness and tingling of the hands and arms - I experience this during the night for about a week before my period. To me, it seems like I have water retention that squishes nerves and such, if that makes any sense. I wake up with my shoulders and hips aching and my hands going numb or tingling like crazy.

#6 Back pain that feels like kidney pain - Yes! I started having episodes of this a few years ago and I thought there was something wrong with my kidneys. It hurts like hell and none of my usual treatments for back pain works on it. Now, I get it whenever I wear a real bra so I have to wear these pathetic bra-let thingys that do nothing for support. Another weird thing about it, I notice my pee is cloudy when I experience it so I wonder if it does have something to do with my kidneys.

#8 Pin-point pain - I occasionally have this, usually in my toes when I'm sleeping. It feels like someone stabbed a nail through my toe.

#9 Feeling like my feet are bruised - Yes! I used to have this a lot and it was miserable. I haven't had it for awhile now (knock on wood).

#10 Yep, I get the sore, swollen lymph nodes too. They were all swollen a couple of months ago and the lymph nodes under my jaw are really tender right now. Also, in the late winter/early spring the lymph nodes in my groin are so tender that wearing underwear hurts. I had to go buy some hipsters because they have a loose leg band.

#11 My right eyelid has episodes of twitching once in awhile. I also have days where it seems like my vision is different, like I need stronger glasses. But I haven't noticed this being connected to the twitching.

#12 Sensitivity to rough textures -I think I know what you mean. I can't stand wearing lace or anything rough like that. It has to be 100% cotton or it drives me crazy.

#13 Hiccups - I notice I get the hiccups a lot when I haven't been sleeping well. And then they upset my stomach, making it harder to sleep.

#15 Bruising - I don't find bruises all the time but I have a perpetual bruise on the inside of my left shoulder blade. My husband and massage therapist always comment on it but it's been there forever and I've never hurt myself there. It's very weird! My mom is constantly bruised but she's on blood thinners. I wonder if any of your medications could be doing that?

#16 Jerking during sleep - I have this sometimes and it drives me crazy. I usually get it when I'm falling asleep. I notice I get it more when I'm sick.

You are not a freak Teresa. I have read about most of these symptoms at one time or another. We'll have to talk more about our mutual symptoms, especially that back/kidney pain thing.

Thanks for the great post!

Teresa said...

Thank you Trisha. I was beginning to think I was just a hypochondriac! I'm not glad that you've experienced some of these symptoms too, but I am glad that I'm not alone.

stipeygirl75 said...

Hey Teresa, I have some of these too. Maybe I can help shed some light on some of them? Or at least let you know you're not crazy :)

#1: I have this a bit too and I blame it on the Lyrica.
#2: I get this alllll the time!
#3: The chest pain could be caused by a rib moving out of place. I don't experience it but I've heard others talk about it and it sounds very similar. As soon as the rib pops back in, the pain goes away. Maybe a chiropractor or massage therapist could help?
#11: My right eye twitches all the time.
#14: I have this too. As time goes on I seem to be more and more sensitive to chemicals in the air such as air fresheners, perfume, cleaning products, etc. I try not to use any chemicals on my body or in the air. To clear some of the stuffiness I started using a neti pot. You put some warm water in it and add 1/8 tsp. sea salt and 1/8 tsp. baking soda. Dissolve that and then pour the water into one nostril and let it go out the other nostril. It feels weird but it really helps my sinuses keep clear!!!
#15: Yep.
#16: Those are called myoclonic jerks. They can happen as you fall asleep or in people with epilepsy or other neurological disorders. I have violent ones when I'm tired. Like my whole body will jerk violently and I'll wake up. Kind of disturbing but I don't think they're harmful.
#20: Maybe the sauerkraut craving means you need more vit. C? I feel better when I eat an organge for example :)

- Sarah

Soft Hugs to All: Laurie D. said...

OK, ready. I've been doing alot of research, and I used to work in the medical field and some of these I have myself.
#2,5,10,14,18,19, I'm not sure, but I do get 2,14,and 19.
1-could be fluid retention. Drink alot of water and elevate your feet and hands if possible.
3-Chostochondritis. It's an inflammation of the cartlidge around the breastbone and ribs. Hurts like he**! feels like a heart attack. I get this all the time.
4-I get this from having herniated discs in my cerical spine, the discs are pinching the nerves that control feeling in those arms and hands.
6-Also, most likely a disc or spinal problem. I have herniated and bulging discs, and spinal degeneration, so I get this all the time. I get steroid injections in the epidural space of the spinal canal. (they don't work)
7-Sounds like GERD, very common with fibromites.
8-symptom of fibro,
9-could be plantars fasciatis. I have this also. It is a problem with tendons in the bottom of the foot. Usually a prosthetic device in your shoe will help, see a podiatrist.
11-Is called Lid Myochimia-it is caused by stress, benadryl will usually make it stop temporarily, but relieving the stress makes it go away.
12-sensory sensitivity is common with fibro.
13-forgot to add it to don't know list.
15-bruising usually happens when you take alot of aspirin products or blood thinners.
16-a more extreme version of Restless Leg Syndrome, I have it, but fibro fog is blocking the name from my brain right now.
17-forgot to add to don't know list. (damn fibro fog)
20-food craving- could be a side effect of medication, but usually when we crave something, we are trying to fill an eotional emptiness with something outside of ourselves. Usually having a good friend to tell your inner most secrets and fears to will help this.

I hope this was helpful
Soft Hugs to You
Laurie D.

Mama White said...

thank you for saying it. I like everyone else, swear I was going crazy, feeling like a hypocondriwhatever. I have #1,2,*3, 4,5,6,8,9,11,12,15,16,and19. I feel like now I can talk about them, its out there and its not just me.

Teresa said...

Thanks ladies for your comments. I don't feel so "out there" anymore since I know that others suffer from some of the same odd symptoms I do. And lets just say it, they're miserable symptoms. Uncomfortable, embarrassing, mind boggling.......But we're not alone. Not anymore!