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Struggling to get a diagnosis (and some advice)...
9 Replies
Xenia_E - February 12

Hi all,

New member here, and I'm at my wit's end...Sjøgren's and Hypothyroidism runs in my family (along with Celiac Disease, Crohn's, Rheumatoid and Osteoarthritis), and as I had most of the symptoms for both Sjøgren's and Hypothyroidism, I decided to get tested for them. The Hypothyroidism bloodtest came up negative, as did the Sjøgren's bloodtest, but my eye doctor said I had a "high indication for Sjøgren's", being that my eyes are severely dry and the tears I have don't adequately cover them. So I also got a lip biopsy and a saliva test for Sjøgen's; the saliva test was "low, but not enough to be positive", and the lip biopsy was "inconclusive" because the doc I went to botched the procedure, and I don't want to get another lip biopsy, because healing from that one was pure hell and took forever. :(

So needless to say, I was back to square one, KNOWING there was SOMEthing very wrong with me, but not knowing what. I went to a new doc, and she suggested it might be Fibromyalgia. I had never looked into that before because no one in my family had been diagnosed with it. She's referred me to a specialist, but there is a long waiting list to see him, so I've started doing my own research while I wait, and came across this group. I would like to know what you guys think of my list of symptoms; if it could be fibro or something else?

Here are the main ones I have (not in any particular order):

* chronic fatigue (all the time, no matter how much sleep I get)
* chronic insomnia and disturbed sleep (all the time--takes me forever to fall asleep, I wake up at the slightest noise, and my brain never shuts off, but churns all night long)
* chronic headaches (much of time--especially when humidity is very low...have had them all week)
* severe cold intolerance (my fingers are blue and ice-cold while I type this, and if I am exposed to cold outside, it takes forever to get warm again)
* chronic pain (it rotates around my body, but is most often in my neck, shoulders, back, hips, elbows, knees and ankles, and is worst when it's cold)
* chest pain (in my sternum--comes and goes, and hurts to breathe when I have it)
* morning stiffness (most days, especially when it's very cold)
* muscle cramps, twitches and weakness (comes and goes)
* severely dry eyes (all the time, but especially when humidity is very low...have to drop them with gel drops several times a day, and they still burn, ache and feel gritty)
* sensitivity to sunlight and florescent lights
* very poor night vision
* dry mouth and nose (comes and goes--can also get surprise nosebleeds)
* anxiety, depression and stress (most the time--some days are worse than others)
* urinary frequency (also keeps me awake at night)
* dry, itchy skin and skin rashes (have had one particular rash for several months now, and nothing seems to help it)
* difficulty losing weight (no matter what I do)
* chronic dizziness (any time I bend over--other family members have to scrub spots on the floor, because I would faint if I tried...also get ringing my ear and tunnel vision when dizzy)
* chronic "brainfog" (can't remember anything or retain any info, can't concentrate or focus, hard to learn new things, feels like I'm walking around in a haze all the time)
* intimacy issues (vaginal dryness and pain during sex--sorry for that TMI)
* chronic itchy ear canals with dry, flaky earwax, and frequent ear infections
* brittle finger/thumbnails that have developed grooves, pits, ridges and bumps on them
* coarse, thin, dry hair and hair loss
* chronic gum disease and mouth ulcers
* chronic itchy heel and heel pain

Does anyone have any ideas what all this may be? (And these aren't even all of them.) Please help!

Thanks,
Xenia

 

Xenia_E - February 12

P.S. Forgot to add these:

* my hands tremble all the time
* I get sinus infections often (but don't have any specific allergies that I know of)

 

majames - February 12

I had a hard time getting a diagnosis too. I also suffered mainly: chronic pain in my hips, back, neck, shoulders, elbows, chest, and knees (sometimes). I also have chronic fatigue, "brain fog", difficulty losing weight no matter what I do, and I have diagnosed depression.

It could definitely be fibro, but fibro isn't much of an answer because they aren't sure what causes it or what exactly is going on. In fact, some doctors don't think the pain and stuff is real. So I wish you good luck!!

 

solanadelfina - February 12

Welcome aboard. Fibro does sound like a possible diagnosis for you, but it can mimic or hide other illnesses. It seems like the best doc to go see for a diagnosis is a rheumotologist. They'll usually do the pressure point test, though more bloodwork might be needed to rule out other possible offenders like lupus or Lyme disease. If a diagnosis is made, you and your doctors can make a gameplan to start getting some of those under control.

For the morning stiffness and sensitivity to cold (Reynaud's, which I also have), a heated mattress pad has been a blessing. Hot baths can also help relax muscles, (especially with some yummy or soothing salts tossed in) as well as some gentle stretching if you're up to it. I also have dizziness and trembling which I'm still trying to figure out, and sometimes lying down for a while and eating many small meals a day can help somewhat. Also, I wonder if a humidifier might help a bit with the various dry skin issues?

Good luck, and let us know how you're doing.

 

axxie - February 13

Hi Xenia, may I ask how old you are, sounds like a possibility of many other things, first I would look at the loss of hormones, hypo go see a specialist just because your numbers are in the range don't mean you don't have a problem. I didn't have a problem, low and behold went saw a real specialist put me on low dose synthroid and voila. Hormone patch also helped me with loads of other problems. I still have FMS but at least my life is nowhere as tough. I do take Cymbalta 60mg once a day and Trazadone 50mg, take half a pill sleep well, wake up 15 hours later, now I take a quarter of the pill, drift off to sleep wake up at a more manageable hour of 10. Keeps me going and see a chiro once or twice a week, depending how my week goes. Good luck to you

 

Xenia_E - February 13

Majames: Thanks for the comment! Did you finally manage to get a diagnosis? My doc has actually been very supportive, believes my pain and other issues are real, and said we would get to the bottom of it no matter what, so I have hope we will, eventually. :)

 

Xenia_E - February 13

Solanadelfina: Yeah, I'm wondering if it could be Polymyalgia Rheumatica, since it shares many of the same symptoms and requires one to have both a high SED rate and a lack of RF, which I do, so I plan to get tested for that too. It's just frustrating that the couple of times I've actually been AT the doc's office, I wasn't in much pain at the time, so she couldn't really trigger my pressure points. My pain comes and goes throughout the day and night, and sometimes I may only have a headache, eyeache and/or dizziness and no bodyaches at all (rarely am I not hurting somewhere, and the fatigue, brainfog, dry eyes, dry skin, itchy ears, cold intolerance, trembling and insomnia and pretty much constant). Also forgot to mention that I clench my jaw and grind my teeth in my sleep, so wake up with a sore jaw.

Anyways, I wish I had a bath, but we only have a shower, and I take loooooong, hot ones, just to get warm. I also was hanging the clothes inside to dry and sometimes boiling water to humidify the house, but unfortunately, it was causing the windows to condense and mold to grow on the windowsills, so we had to stop (also, the washing mashing broke, so we we're waiting for a new one). And the day after we stopped hanging the clothes inside, my headache started with a vengeance, and hasn't gone away since, and my bodyaches, chest pain and morning stiffness got worse then too. It's been around -4F here and no humidity, and I'm not handling it very well. :(

I do keep wrapped up in my houserobe, fuzzy socks and slippers, and avoid going out in the cold as much as I can, and have a cloth bag filled with wheat that I heat up and use as a heating pad. I also take naps and sleep in when needed, but it's all so frustrating, because I can't work a normal job due to my health issues, can't even (deep)clean the house properly, and haven't been able to get on disability yet (since I need a diagnosis to qualify). All this makes me even more depressed, and feeling worthless that I'm not able to contribute much of anything to the family income. My hubby tries to assure me that I'm not a burden, but I feel like one nonetheless. :(

 

Xenia_E - February 13

Axxie: I'm 36, and yes, I plan to ask my doc about the hormones...Thanks for the comment! :)

 

axxie - February 14

Xenia_E think in the last year or two, has there been any event that cause you to have these symptoms, for example, unremitting grief, six months or longer, trauma, long labor, surgery. If yes, it could be the iniation that would activate biochemical changes, causing symptoms, such as reduced energy, fibro, etc. The tender points are along the spine in the neck where the head and neck meet, upper like of the shoulder, on the back fairly close to the dimples above the buttocks, bellow the buttocks, very close to the outside edge of the thigh. on front of your body the tender points are on the neck, just above inner edge of the collarbone, on the neck a little father out from the last points, about four ginder widths, down and inner palm side of the lower arm, also inner side of the knew in the fat pad. If you do have Fibro, over 75 % FMS patients reported experiencing substantial fatigue. Lack of adequate, restorative sleep, stress you are putting yourself through because you are not the same person has before, pain, trying to overwork to compensate, lack of exercise, emotional depression or just suppressing your emotional feelings, sense of frustration, and sensory overeload.
Fatigue will be a challenge trying to pace yourself will be another and looking at your eating habits and changing your diet. The doctor will give you medication to help you with your pain and moods, and I would suggest you see a chiropractor once a week to get your spine and neck align this will help you loads. Take loads of fluid preferably water and more water, and please no coffee, teas, chocolate, no bread, butter, eggs and red meats, no potatoes no artificial sugar whatsoeaver. You will with time learn to manage your symptoms with your diet and with your medication. As for a deep cleaning for the house, forget it, I haven't been able to do one in two years, so I got a few people in cost me some money and they did it for me, I felt like a million dollars afterwards. As for showers, that is good, try to bring in a plastic chair you can sit on and have your back to the water and just steam yourself in the shower if you can. Another thing always wear a scarf around your neck, in the house and outside, this will help you with neck pain. Keep me posted?

 

axxie - February 14

A few typos, the tender points, inner side of the knees and fat pad. As for emotional depressing etc, see if you doctor will prescribe Symbalta, it's a depressant but it helps people with pain and fibro patient. If you can't sleep have him give you Trazadone also a depressant but you take it for sleeping at night. See how well you do with that. You don't need to be fibro to be treated for the pain and emotional feelings and Symbalta is a good choice. Good luck

 

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