History of trouble... possibly leading to fibro?

[Siderea]

Hi everyone! I need help figuring this out, so I'm going to give you A LOT of details. Feel free to skim everything in order to read what's most helpful to you.

The only diagnosis I have at this point in time are chronic fatigue syndrome, arthritis (type is unknown, but ruled out rheumatoid and osteo,) and pulmonary stenosis (heart murmur of the valve to the lungs ). I was born with the murmur. I'm also allergic to corn and wheat, and I have to avoid dairy and soy because they make my arthritis worse.

I'm coming to you today because I'm getting more and more depressed about my symptoms, and some support would be really awesome. I'm guessing I have either fibromyalgia, lupus, or hypothydroidism. My doctor keeps bringing up Multiple sclerosis as a possibility too. I've seen nearly every specialist in town and no one knows what to diagnose me with, but every doctor can see I have issues.

About 2 years ago I went to a hand doctor because I thought I had a bone sticking out of my wrist, which turned out to be a large ganglion cyst. At that time he diagnosed me with arthritis based on my x-rays. My bones had thick white outlines, and he saw that some of the bones were too close together and rubbing on each other. Then I ended up moving to North Dakota, which was very hard on me. My wrists got worse and worse, but I didn't go back to a doctor until my thumb started to give me extreme pain with movement. I was treated for DeQuarvains (inflammation of the sheath of the tendon) by being put in a brace and told not to take it off for 4 weeks. So I did - and learned to use my left hand for everything. But then my left hand started to develop the same thing, only it wasn't just in my thumb. All my tendons in my hand started to burn, and so I was put with an Occupational Therapist. She gave me lots of steroids and worked me through it, and now I can use both hands again. But they're still prone to extreme pain, and I have to be very careful about not over doing it.

But then my ankles got worse - at first I felt like I was stabbing the inside of my ankle with every step. Then I started to develop other pains, like electric shocks going through my feet, or the feeling of tons of pressure on one spot between my toes. Then I got the same kinds of pain - burning, electric, and pressure - going up my arms and legs. My OT had to do a lot of massage work on my arms, but the pain kept spreading upwords. Next my elbows and knees, and now my hips and starting to go into my shoulders.

It get hard to walk, my arms get really weak and it's hard to hold things for long, and the pain seems to come and go with no real cause or reason. I'm also struggling mentally: my memory is failing me a lot, having a hard time with focus, no mental willpower to think through things, and I zone out a lot. I'm tired all the time, and coffee doesn't help. It makes me jittery instead of energized.

Also throughout my life: heart palpitations and mild chest pain, trouble taking a deep satisfying breath, insomnia (though an extreme diet I went on seemed to take care of it, though slowly I'm having trouble with it again,) extremely painful menstrual cycles and overly heavy flows, and back pain.

Doctors I've worked with: Chiropractor (been going regularly for 5 years,) acupuncturist, occupational therapist, orthopedic specialist, allergy specialist, gynecologist, nerve specialist, and a few internal medicine doctors. I have not been able to get into a rhumatologist yet because North Dakota hospitals can't keep up and there is a 4 month long waiting period to get in.

I've had over 20 tests conducted on my blood and results keep coming back to show I'm perfectly healthy. One doctor said on paper I'm the golden example of a healthy human. I had an EMG done on my hands and it showed my nerves are just fine. I'm getting hormone testing done tomorrow, but I've just done about 7 sessions of acupuncture and I was told it can fix hormone problems, so I shouldn't expect negative results tomorrow.

Can any of you relate to any of this? Does this sound like fibromyalgia to you?

Thank you so so very much for your time and thoughts!

Update: Forgot to mention! I had an abscess in my vulva in February of this year that had to be drained, and it was 2 weeks of healing and recovery. I don't know if it is related or not, but it happened just as I was going through the pain in my hands initially. I also notice that my pain is worse with the weather and when I use my muscles too much. For instance, holding a book open for too long flares the pain in my thumbs, or crossing my legs or ankles while sitting flares the pain in my shins and knees.

I should also mention that I'm 26, female, and I do fight eczema when I'm having an allergic reaction either to food or molds in the air.

 

[1sweed]

Gosh, you have been put through the wringer with many different symptoms. Is there any chance of seeing a Neurologist in ND? While you might need to see the Rheumatologist, if you have any other type of muscle nerve disease then the neurologist would need to examine you. That goes for MS as well.

While some of what your going through I can relate too, I cannot say if it is just from fibro or any one of many different dieases. In the begining lots of illnesses start out with the same symptoms and often they can take years to develop. So tests can be normal in the begining and gradully the diagnosis becomes clear.

With any illness management of the symptoms is the hard part. We want that diagnosis, but with or without it there are symptoms and problems that need our attention. So in this I am glad you found the forum, as now you can read what others do when dealing with the many different health problems that mess up our lives.

So read through the posts in each section. Feel free to post anywhere and ask more questions concerning your symptoms that bother you the most. Remember that stress can make CFS and eczema worse. So if you can cut back on your stress level in ways that help you to relax, it might make a huge difference in your life. I do it by listening to music and watching funny movies, reading or doing crafts, walking or sitting and watching birds at a feeder in my backyard or other wildlife. I also take time to call elderly neighbors and talk with them, or writing things down in a journal may help. Anything that takes your mind off of your troubles for a while can help your body to relax, which in turn improves your wellbeing.

Talking with a mental health counseler can help as this type of health provider can teach you methods of reducing stress and give moral support that helps you deal with people who put you down or make life harder by their comments.

Hope you continue to come here and look forward to seeing you around the forum.

 

[Chrispy93]

hi siderea, i can relate to almost all of your symptoms. i have been diagnosed with FMS, MDD, GAD, and cronic lyme. Is your doctor looking more into your unknown arthritis? That could mke the diference in finding the best medication for you. I had carpol tunnal surgery on my right hand. after a few months i decided it was not worth doing the left hand. the problem is still there. and up to my elbows now. (tennis elbow) and that dam ganglion cyst just loves to pop up at the worst times. Heart palpatations and not getting a deep breath is the anxiety. 20 years ago i was on the phone with 911 for an hour because i couldn't catch my breath. I've since learned how to deal with it. The one big thing (in my opinion) related to fibro that you didn't mention is deep pain or ache in your muscles. Like in the middle of your thigh. Muscle knots in your neck and shoulders? There are many disorders that have the same symptoms. And we all feel and express diferently. It sounds like you are finding good doctors. They seem to be running the usual gambet of testing before diagnosing fibro. Pending this round of your testing, maybe you can see a doctor who's primary practice is fibromyalgia in your area. I also thing talking with a mental health counselor is a good idea. It's alot to deal with. Talking about it to someone who is there just for you is helpful. I currently go every other week. And finding this forum has helped me a bit too.

 

[Siderea]

1sweed, thank you! I have had an EMG done by a nerve doctor. What could a neurologist do? I know I'd need an MRI to get tested for MS, at the very least. I'm open to seeing whatever specialist I need to, but the waiting period here in Bismarck is so long (4+ months) because there is only one specialist in each area and the population is growing rapidly. A few doctors have highly recommended that I go to Mayo, but figuring out HOW to get to Mayo and WHO to see once I'm there is really stressful. It's within driving distance (7 hours,) but I don't trust I'll be able to drive that long anymore. I used to love road trips, but driving can be difficult now.

I agree so much about cutting down on stress and finding things I enjoy to do to relax. One of the most frustrating things of all is not being able to do what I enjoy the most, mainly because my hands wear out so easily, and then the tiredness in my hands turns into bad pain all up my arms. I love to work with my hands: sewing, drawing, writing, cooking, gardening, (and I'm a pretty big nerd - I love some types of video games!) Even reading a book is difficult because of having to use my thumbs to hold it open, and my weak arms to hold it up. So I need to keep finding solutions. I hate it, but watching TV has become the easiest way to relax. I never was much of a TV watcher until now. I've discovered the show Parenthood, which is addicting and allows me to cry - a lot- when I need to since the characters are always struggling.

I have managed to make friends here in Bismarck, ND, but one thing I really struggle with is keeping up in a conversation. My mind has slowed down so much, and I often find myself saying really stupid things, or I just don't "get it" right away (even things that are not hard to understand.) I get confused so easily, and I'm so often fighting mental laziness. I know I should be really super into the conversation at hand, but I just can't get the gears in my brain working well enough to participate in the conversation well. So I've found that spending time with friends (or even socializing at work, which is an important part of my job as I'm in charge of hospitality,) can backfire, because I get really stressed out about how I'm too tired to enjoy people. Sigh!

Chrispy93, wow! I'm sorry, but I don't know what FMS, MDD, and GAD are. Could you explain? And can't you only get lyme disease from being bitten by a tick? Is that how it happened for you? I'm sorry you're suffering so much!

My occupational therapist is doing tons of research on my arthritis, but she's not the right kind of doctor to figure it out, unfortunately. I wish she was my specialist in all areas because she LOVES to figure out the puzzles that bodies present, and she's very methodical and logical about finding the best course of action for healing. My orthapedic doctor essentially gave up on me, saying she doesn't know what more she can do for me. She saw that I have arthritic problems, but kept saying to see my OT for the pain and wouldn't do more for me. So at this point, no, I don't have a doctor who is actively figuring out my arthritis. My gynecologist is having me get hormone tested, and she said hormones can sometimes be linked to arthritis and pain. So we'll see where that goes.

My muscles have been getting knotted up very easily for many years. I've been getting massages when the pain gets too intense, but I spend a lot of time rolling around on a tennis ball to relieve the knots. My husband works on my trigger points too. I figured it's from years of bad posture after years of overdoing it in ballet and gymnastics, but now I'm questioning that too!

I used to work at a mental health clinic (as the office manager,) so I have considered calling the psychologist up to see if we could have (free, or discounted) Skype sessions. Ha! He is an expert at hypnotism too, and I have definitely been thinking that some hypnosis could help since I saw it help so many people.

Thanks so much for all your comments!

 

[1sweed]

If you love reading then you could read stories online or watch videos on youtube, or even listen to books on tape. Local libraries have all kinds of books on tape. You need a cassette player to listen to them. Some cd players for music work with these tapes. There are lots of places online to read for free. Just a thought that came to mind.

I watch videos about gardening and nature, and listen to music as well. Some crafts can be very difficult due to weak hands. I have that problem too. You might want to consider jigsaw puzzles or crossword puzzles. They are good because they keep your mind active working out the problems of finding words or putting pieces in there right places. Also crafts are for our entertainment, and the results do not have to be perfect. Fun is all that matters. Some projects take longer to do, but if it makes you smile, go for it.

Best of luck with this, and please continue to share here. I am sorry the waiting list is long for doctors, but time seems to fly by anymore and so 4 months is nothing. Hang in there!