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Avatar universal

11 years of pain. What's wrong?

I hope you can point me in the right direction. I've been trying to get help for 11 years and no doctors will take me seriously.

I am 39, female with 5 children. My symptoms started during my last pregnancy but were dismissed as part of being pregnant (though I knew better). I am in constant pain. The muscles, the joints, certain spots just hurt to touch. I always have a headache; it just varies in intensity but never totally goes away. I am always exhausted even after a good nights sleep. I'm always cold (my waking temp is 97.8 typically) and cannot tolerate hot or cold temps. My hair is falling out. I am easily disoriented and forgetful. I can't drive anymore because I get so disoriented it scares me and I don't know where I am. I have extremely dry eyes/mouth and my fingers often turn purple. I also have a light rash over my nose and cheeks and it looks dark around my eye lids (it looks like eye shadow but I don't wear makeup). The rash gets worse if I go outside. It does not itch or hurt--just doesn't look nice. Sometimes people ask if I have sunburn which isn't really a possibility since I don't often leave the house.

Any type of exertion just wipes me out so I rarely leave the house. I can't be active even though I love the outdoors and there is so much I want to do! It's s frustrating. Some days I can hardly move because the pain is so intense. I also have daily lower back pain that I feel is related to my kidneys. Frequently, I have bladder infections. I wake with the pain in my lower back (mostly the left side) but after urination, it seems to improve. I also have occasional anxiety attacks (like when I'm driving). At one time I also had what was thought to be absence seizures, but testing showed nothing wrong. MS was suspected at one time because of leisions on my brain, but a neurologist said it was "just migraines".

All of my blood test seems normal. I had one doctor say I have fibromyalgia and undifferentiated connective tissue disease. She felt that it was actually mixed connective tissue disease but wanted to watch me a bit. Unfortunately, I had to move out of state and leave the only doctor who cared enough to try to find an answer. I suspect lupus even though I have a normal ANA. My mother has lupus and fibro.

I saw a doctor here and he was horrified that my old doctor had me on some serious meds including a narcotic pain killer (that doesn't work anyhow so I am weaning off--without the help of the doctor who refuses to have anything to do with the medication). This doctor was very hateful and told me if I have been sick for 11 years he sure can't help me. He wants me to take antidepressants. I am not depressed! I am in pain! I have to work from home because I get sick so often, I could never hold down a job. But I am having a harder and harder time keeping up. I feel so drained, I just can't do any more.

Can you give me some suggestions at least? I just don't know what to do anymore. I am afraid to try another doctor. I'm so tired of being told nothing is wrong. If nothing is wrong, why can't I live a normal life? I don't have time to be sick. I need help. Please.
8 Responses
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351246 tn?1379682132
MEDICAL PROFESSIONAL
Hi
Welcome to the MedHelp forum!
Yes, you will need to stop all the supplements. Stop for 15-20 days and then do all the tests. By this time most of the drugs will go out of the body, especially the fat soluble ones.
Hope this helps. Take care!

Helpful - 0
Avatar universal
Doctor, sorry, I ahave one more question. You said, "Also assess the level of Vit D, Vit B12, calcium, potassium, iron, hemoglobin etc." Should I stop taking my supplements before these tests? How long should I stop taking them before being tested for accurate results? (Okay, that's two questions)

I've always preferred natural methods of healing if at all possible (though it isn't always an option). I take folic acid, magnesium (for the migraines), vit. D, milk thistle (to help detox from the pain meds), Omega-3 fish oil (for the arrhythmia) and cranberry capsules (for the frequent bladder infections). I also take melatonin at bedtime to aid my sleep. I used to take other supplements (I've run out and can't afford more right now), and they are helpful, but I don't want to goof up any test results.

Thank you
Helpful - 0
Avatar universal
Thank you all for your input. Doctor, thank you for taking the time to comment. I will see if I can find an internal medicine specialist as you suggest. I hope I don't need a referral because there is no way I am going back to the last guy I saw. He made it very clear that he didn't want to be bothered with me and that he thought my previous doctor was totally incompetent. He reduced me to tears and then decided I must be depressed because of my reaction. I don't understand why people who don't care about others decide to get into medicine.

My gut tells me I have lupus as well as possibly a thyroid problem (I'll have to research Hahimotos Thyroiditis; I've heard of it but never looked into it before). I also have an arrhythmia that no doctor would take seriously until my previous doctor (I so miss her). I never even told her about the chest pain I get; she heard it and asked me if I had the symptoms that I was, indeed, having. I didn't tell her because other doctors I mentioned it to acted like I was making a big deal over nothing.

I did have a checklist of criteria for lupus. I did have 11 of them and mentioned it to my old doctor. Her diagnosis of undifferentiated connective tissue disease confuses me, because they symptoms that could be scleroderma and the other one (I forget the name of it) are also consistent with lupus. So, to me, it should just be lupus. But I'm not a doctor, so what do I know. :(

Doctor, can I ask one question? Does it irritate doctors when a patient tries to be very detailed about symptoms? I always make a list of issues, no matter how minor, because I feel like making a diagnosis is like putting a puzzle together. It's hard to do without all the pieces. I cannot decide if a minor issue is truly minor, so I list everything. You never know what might be related. I figure the doctor can decide if it is relevant or not. I'm not expecting that long list of issues to be fixed; I just want to present the full picture so the doctor knows what's happening.

Most doctors just sigh and put the list aside. They look very annoyed and I don't understand why. Do they think I am trying to do their job, when in fact I'm just trying to hep solve this problem? My last doctor thought it was wonderful. My current doctor looked at it, but decided to focus on the pain meds I was tapering off of. He repeatedly yelled that he would not give me a prescription for it. I repeatedly told him I didn't want one. I want it out of my system. He wouldn't even tell me the best way to get off the stuff, so I'm doing it on my own. It isn't easy, but I'm making good progress. It should be done in just a few more weeks. :)

Sorry I ramble so much. I write for a living so keeping things brief isn't easy.

Nicola, I should have the results of my thyroid tests someplace but I can't find it. We moved here only a few months ago and I haven't located everything yet. As soon as I track it down, I will post it and see if you have any thoughts. I've never had my adrenals tested as far as I know. Oh, and you asked where I am. I am in Colorado, USA. I expect we will have insurance again in a couple of months. My husband just changed jobs. The last one had awesome insurance but it was only part time and we couldn't manage on that. Sure was hard to give up that insurance, but paying the bills and feeding the kids is more important. :) So unfortunately, I will have to wait to have insurance again to see anyone.

Erin, you're right. It is hard to find a doctor that believes in Fibro or CFS. My current doctor spoke about "so-called fibromyalgia" when I told him what my previous doctor diagnosed me with.

It may sound silly, but I wish I could just get a positive ANA so there would be no question (I know a positive ANA doesn't definitively mean lupus, but at least it would be considered by the doctors). Then I could get a diagnosis and get some help. I just feel at the end of my rope. I'm afraid of how the next doctor might treat me.

Is there anything I should ask when I make an appointment to determine if the doctor will be considerate? How do you ask, "Is this doctor nice or is he/she a jerk?" It's not like they will say, "Sorry, he's pretty hateful." lol I will do some research on doctors in the area and hope I can find a good one. My only worry is, some of the places where people "review" their doctors are often places where people vent when they are upset. So a great doctor may get a bad rep because the patients who love him never think to post about it on a website (if that makes sense).

Going to an appointment is such a huge effort. And the stress of wondering how it will go just exhausts me. I get home completely drained and it actually takes a day or two to recover from a doctor appointment (silly, I know). I guess I'm just scared. I wish I could just plug my symptoms into a machine that would give me a diagnosis. Then I could take it to a doctor and get treatment and be done. I can accept being ill; it's been 11 years so it's not like it will be a shock. I can't deal with being treated like I'm dreaming it all.

Thanks All for reading my ramblings. Really, just talking to people who care helps so much. I appreciate you very much and I will try to keep everyone posted on my progress.

Thank you for listening.
Kat
Helpful - 0
Avatar universal
I think you should definitely look at lupus, fibromyalgia, and chronic fatigue syndrome.  If lupis is ruled out, it can be hard to find a doc who knows about fibro and cfs....my best friend has fibromyalgia and it took her forever to find a good one.

There are several good websites for people with fibro or cfs, and many have 'good doctor' lists which you can use to find an experienced doc close to you.

Good luck!!
Helpful - 0
351246 tn?1379682132
MEDICAL PROFESSIONAL
Hi
Welcome to the MedHelp forum!
Many patients with lupus have a normal ANA. There are 11 criteria for lupus diagnosis. If most of these are present then you definitely have lupus given your family history. Hahimotos Thyroiditis too should be ruled out as it is also an autoimmune disease. Both Lupus and Hashimotos can coexist.
Basically you should consult an internal medicine specialist regarding this. Also assess the level of Vit D, Vit B12, calcium, potassium, iron, hemoglobin etc. Diabetes too should be ruled out. I think you should discuss these possibilities with your doctor. It is difficult to comment beyond this without examining. A comprehensive investigation is required keeping all the points in mind.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!
Helpful - 0
Avatar universal
Hi, its me again.
How strange i have had the EBV virus, as well ive read that the Ebv virus can cause the immune system to go out off whack, and turn against itself as in auto-immune diseases.
There is a thing were by we get a few auto-immune illnesses at the same time.

Iwould like to ask have you had your adrenal glands tested, and adrenals can cause you to feel absolutely whacked out also.

Maybe you should try to see an immunologist,
I would definately keep a journal, write down everything even the food you eat, and work from there, just trying to piece together what is going on
Have you got your blood results on your thyroid?

If you have post them,
I dont know were you live, im in the uk.

You sound like you have to pay, where ever you are.
I have been in and out of bed for 12 years, and i even had to resort to paying for most off my medical tests and operation, as my doctor just fobbed me off.
Trying to give me anti-depressants like you.
But we know our own bodies, and when something is wrong.
Its just frustrating, when you feel your getting nowhere, and all you want to do is just feel a little bit better.
Im here if you need any help or just a chat.
Take care
Nicola
Helpful - 0
Avatar universal
Thank you Nicola. I'm so glad you responded. I do take vitamin D and B complex. I know I am likely to be deficient in D since I don't go outside much (anymore). The doctor that was helping me before I moved said I have Raynaud's and Sjogren's. She said my thyroid tested as "low normal" but she had me on Cytomel anyhow. I didn't notice any difference. She tried so hard to help but she had me on about a dozen meds, may of which made me much sicker. (thought I might die taking Plaquinil)

It's interesting for you to say it, because my headaches do get worse before my period (and oddly last month I had 2 periods) so I'm guessing my hormones are out of whack too. I have had migraines my entire life. Liquid magnesium does help but I can't afford it right now. Today my head is so bad I will be going to bed soon. I have work due but I just can't today.

About a year and a half ago I also had a bad case of EBV. It took me a year to recover and I was bedridden almost that whole year.  I also get sores in my mouth which I think is a symptom of lupus.

I know I need help, but I just can't take another hateful doctor. Do they think I want to be sick? Do they understand how much I miss? I know I'm not likely to be cured, but if I could get help to manage this, I'd be happy with that. I just don't know where to turn. How do I find a doctor who will care?
Helpful - 0
Avatar universal
Hi , ive read your post, and feel for you, like you i have battled with illness for 12 years.
I would like to ask have you had your thyroid tested? especially when you said joint pain , and losing some off your hair.
When i was reading it sounded lke fibromyalgia, which can also be connected to thyroid disease.
Secondly the rashes, ave you seen a dermatologist, with them,

It sounds like an auto-immune illness to me as there is a lot going on.
also there is CFS, to look at which is similar to fibromyalgia.
Its funny my auto-immune disease, started after i had my daughter,

I would start with a good blood work up, even looking at B12, and Vitamin D
Then either get to see a rheumatologist, and dermatologist to look at the rash, facial rashes can indicate lupus, but there are other auto-immune diseases to look at.
Have you been tested for Raynauds, and Sjorgens syndrome?

Im not a doctor, so i cant say, but my advice would also try to work from within, and keep a diary of when things happen, like example you feel worse at the time off menstration, etc
Then you can try and piece it all together,
Also you doctor doesnt sound like he wants you to get better especially when he offers anti-drepressants, as a cure.
I hope this helps,
Happy New Year
Take care
Nicola
Helpful - 0
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