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Old 05-24-2013, 10:02 PM   #31
LiveYourLife
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Quote:
Originally Posted by disfan07 View Post
I'm confused....why were you upset that she wanted you to take cymbalta? Yes it's an antidepressant but it has many other uses as well and chronic pain is one of them. I was prescribed cymbalta at one as well for chronic pain. It didn't work but I never even thought to take offense that it was an antidepressant.
Lexapro is often prescribed for IBS related abdominal symptoms and it's an antidepressant as well.

Antidepressants and anti anxiety meds have a lot of other uses (both on label and off label) that have nothing to do with mental illness.

I just wouldn't refuse a medication that could help because it's an antidepressant.
Nevermind. Not worth engaging.
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Old 05-24-2013, 10:22 PM   #32
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Originally Posted by paintnolish View Post
I think it's more because she wants to treat the symptoms but not find out what's causing them. I'm still breastfeeding, and I don't want to wean him so I can take something that may or may not work. I also don't want to take some medicine I have to wean myself off of.
Thank you for answering my question. It makes sense about not wanting to wean. You have to forgive me....I forget that other peoples doctors are not necessarily in the same school of thought as my doctors with treating the symptoms

Is your doctor refusing to do anything more to find out what is going on? If so I would find a new doctor.

I try out meds that might or might not work all the time...but at the same time, my doctors continue to search for an answer. Everyone believes that at least my GI, neuro, heart and joint problems are connected in some way but we just don't know how. But I also can barely function on a daiy basis. I missed 11 weeks of school this year (out of 22 ---quarter system) so my doctors want to treat my symptoms while testing. We are at the point where we just take a leap of faith and hope for the best. But like right now, the goal is to get me through graduation in 3 weeks. And that means they have dosed me up on meds to help my symptoms (steroids, additional asthma meds, additional allergy meds, etc) and we have stopped any testing until July.

So in my mind, and from my experiences, starting a new med does NOT mean stop testing. But my doctor an I both agree that we've been testing for 3 years and have no definitive answer so right now, treating the symptoms is the best thing to do.

And I apologize to you if I what I said came across as judgmental or condescending. I was honestly just trying to explain what my experience has been with cymbalta and how my doctors and I approach it.

And I completely understand how annoying the stress comments can be. I am actually in therapy right now. I was diagnosed with depression and anxiety long before I got sick (I was diagnose at 14 with both) but the therapy has been amazing with helping me cope with my illnesses and with all of the Hospitalizations and unknowns. But with a lot of doctors, it's like as soon as they find out I'm in theray, they assume everything is stress and/or depression related. Luckily, my own doctors don't do that and my therapist has told every single one of them that while episodes of massive stress might be exacerbating my symptoms, she believes 100% that there is something physically wrong and we just haven't found it yet. so it definitely helps to hear that from her.

That long novel was just to say that I understand the frustration revolved around that....and it did take time for me to accept going on antidepressants for chronic pain because in my mind it did feel like they were brushing it off but I'm glad I tried it and my doctors did not stop trying to figure out what's wrong just because they gave me a medication.
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Old 05-25-2013, 10:06 AM   #33
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Originally Posted by disfan07 View Post
Sounds very similar to me.

I have chronic joint and muscle pain. I have endometriosis and PCOS. I have tachycardia with PVCs, severe steroid dependent asthma, severe eczema, multiple environmental allergies and severe food allergies. I also have eosinophilic gastroenteritis and a GI motility disorder. I also have a B12 deficiency.
Sounds just like me, circa 2000, minus the asthma. Plus, I had a chronic cough, horrible rashes on my FACE, and horrible brain fog. Could not focus on anything, remember anything, plus bad mood swings. Good times for my DH and young daughter.

If you think doctors are clueless now, you should have tried this 13 years ago. Finally diagnosed myself with chemical sensitivities and found a holistic MD that helped me figure out what to do. I got off all my medications, started eating organic, got all chemicals, fragrances, etc, etc, etc, out of my environment. We did a lot of work on our home. And I got better, but had to be careful for a long time.

Turns out my building at work was over an underground jet fuel leak, and it was getting into the water. My government agency has never admitted it, but the fuel leach is real, and I remember tasting it and smelling it. I nearly died.

Even with my treatment and recovery, I still have a high ANA and have been diagnosed with Sjogrens and last year, breast cancer. Going gluten free (primal, really), taking D, magnesium, fish oil, and other supplements, trying to up my activity has me feeling human again. And, I can think again, that's a big one!

It doesn't take jet fuel to make a body go haywire these days. Seems like it can be a lot of things, tick bites, stress, inflammation from chronic high blood sugar. We all seem to be winding up in the same place, though it is shocking that it is happening to such young ones! Not so many men though, isn't that odd? Prescription meds still react the wrong way for me, they are chemicals after all. If all you can manage is to make your diet healthier and take a few supplements, do that.
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Old 05-25-2013, 10:29 AM   #34
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how do you find a lymes literate dr. I'd love to be tested. I"ve been dealing with severe back pain, joint paint and stomach problems. They can't figure out the problem. I'm self diagnosing which is clearly making myself worst.
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Old 05-25-2013, 11:07 AM   #35
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Originally Posted by disfan07 View Post
And I completely understand how annoying the stress comments can be. I am actually in therapy right now. I was diagnosed with depression and anxiety long before I got sick (I was diagnose at 14 with both) but the therapy has been amazing with helping me cope with my illnesses and with all of the Hospitalizations and unknowns. But with a lot of doctors, it's like as soon as they find out I'm in theray, they assume everything is stress and/or depression related. Luckily, my own doctors don't do that and my therapist has told every single one of them that while episodes of massive stress might be exacerbating my symptoms, she believes 100% that there is something physically wrong and we just haven't found it yet. so it definitely helps to hear that from her.
Disfan07, I hope this doesn't translate wrong. You are too young too have all of these ailments. 99.9% of your posts on the DIS are about your health issues (no, I did not have to go back and look up your past posts, that is how easily you are identified). You seem to let this define your life - going from Doctor to Doctor for years to get a diagnosis on paper, to put a name to your health issues. That is not ok for someone of your age. I know it must be difficult, but you may want to focus more on your therapy, as it may benefit you more. You are so young to have such a huge list of medical related issues, and the myriad of testing and procedures, it honestly makes me sad for you. Can you tell me something about yourself that is not related to your health? Again, I hope that didn't come out wrong, if it did, I'm sorry.
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Old 05-25-2013, 12:04 PM   #36
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Our bodies are so bombarded with toxins and chemicals these days, on purpose and not on purpose. Prescription meds treat symptoms and yes sometimes they are needed. But our bodies can sometimes heal themselves if given the proper tools. We use essential oils for most health ailments here. I use it for severe joint pain from an old knee injury. We use for headaches, stomach aches, mood, etc.
I am not saying these natural treatments are a cure, but they allow our body to heal on its own.
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Old 05-25-2013, 01:02 PM   #37
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Originally Posted by paintnolish View Post
I think it's more because she wants to treat the symptoms but not find out what's causing them. I'm still breastfeeding, and I don't want to wean him so I can take something that may or may not work. I also don't want to take some medicine I have to wean myself off of.
Sometimes knowing how you respond to various medications can give new insights into what the condition might be. And chronic pain really isn't good for you. It's exhausting and means your body's stress response is always activated, which can lead to other mal-adaptive health situations. I would ask directly if treating the symptoms means the end of attempting a diagnosis.

With respect to medications and breastfeeding - I suggest you pick up a copy of "Medications and Mother's milk" by Dr Hale (or better yet, a subscription to his online database). It is THE reference for medications while breastfeeding. Specifically to cymbalta he's said "Secondly, we have some good on the transfer of Cymbalta and it is quite good. Very very little gets into breastmilk and the fact that your infant is 8 months old is even better for your situation, as he will get and retain very limited quantities. Only about 0.14% of your dose enters breastmilk. This is one of the lowest I know of." The further information he provided is:
--------From the InfantRisk Center---------------

The transfer of duloxetine into breastmilk was studied in 6 women who were at least 12 weeks postpartum and taking 40 mg twice daily for 3.5 days.[2] Paired blood and breastmilk samples were taken at 0, 1,2,3,6,9, and 12 hours postdose. The milk/plasma ratio was reported to be about 0.267. The daily dose of duloxetine was estimated to be 7 µg/day (range=4-15 µg/day). According to the manufacturer, the weight-adjusted infant dose would be approximately 0.141% of the maternal dose. Further, even this is unlikely absorbed, as duloxetine is unstable under acid conditions of the infants stomach.

In a more recent study in a mother consuming duloxetine (60 mg daily), levels in milk were 31 µg/L and 64 µg/L at trough and peak respectively.[3] The Milk/plasma ratios were 1.29 (trough) and 1.21 (peak). These authors suggest an RID of 0.14%.

------

Antidepressants, anticonvulsants, and other psychoactive medications are becoming very popular for chronic pain management. They're safer and less addictive than opiate painkillers. I was on Elavil (which is a tricyclic antidepressant) for pain. I had -excellent- pain control, at levels far lower than are effective on depression. Some people get minimal pain control from Elavil, but when they combine Elavil with steady dose NSAIDS (ibuprofen or aleve), they have better and steadier pain control than they had on opiates. Some find that there's no effect.

I'm with you, playing medication roulette sucks, and so does running through a million expensive tests with no answer. Generally (including with cymbalta) I've titrated slowly up, but the dosages are times involved are short enough that I could quit cold turkey without withdrawal that was worse than the side effects. I'd get a day or so of bounce-back pain, then just wait out the rest of the washout period. I think neurontin was the only one I stepped back down, and it took less than a week.

Good luck - both on the diagnosis, and finding an effective medication that fits your life.
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Old 05-25-2013, 02:49 PM   #38
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Quote:
Originally Posted by npmommie View Post
Our bodies are so bombarded with toxins and chemicals these days, on purpose and not on purpose. Prescription meds treat symptoms and yes sometimes they are needed. But our bodies can sometimes heal themselves if given the proper tools. We use essential oils for most health ailments here. I use it for severe joint pain from an old knee injury. We use for headaches, stomach aches, mood, etc.
I am not saying these natural treatments are a cure, but they allow our body to heal on its own.
OT but I wish any of the homeopathy stuff worked for me. When I was battling chronic daily headaches and back pain I tried everything. Unfortunately the back pain required a surgical fix, and the headaches required medication (which I am thankfully off of now). I think every body is different and people have to try things to see what works for them. My older sister has had pretty good success with homeopathy for some things. As for my younger sister...at this point she'd be willing to hang upside down while shooting shark pee up her nose if that would take away the pain LOL so homeopathy is still very much on the table (as is acupuncture and acupressure).
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Old 05-25-2013, 03:58 PM   #39
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I have joint pain that comes and goes. It is associated with low Vitamin D and Hypothyroidism. As long as I take my Vitamin D, and have my synthroid adjusted as needed I'm good to go.
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Old 05-25-2013, 03:59 PM   #40
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My DD's illness started with joint pain. It then moved to extreme fatigue, hair loss, headaches and dizziness. Her ANA would alternate between a + & -. Very low Vit D. All bloodwork came back normal. She got sicker and sicker until a very good doctor finally tested for and diagnosed Hashimoto's. It's an autoimmune disease that attacks the thyroid. Many doctors missed it because her thyroid levels were normal, but that's not uncommon.

There is a reason and it needs to be accurately diagnosed. She needs to keep pushing until they know. My DD is almost all better now thanks to one small pill per day. I just wish they hadn't dismissed her joint pain when she had it because it could have prevented her from suffering so long.
This is the type of hypothyroidism disease that I have.
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Old 05-25-2013, 06:35 PM   #41
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I battled joint pain for years. Issues would crop up in different joints - first my hands and wrists, then a knee, then the other knee, then back to my hands and wrists. Because of my age and my line of work (at the time), I was diagnosed with tendonitis and/or repetitive motion injuries. At the same time I had GI issues which my doctors and I never thought were related.

Then I started to have tingling in my toes that slowly worked its way all the way up both legs. That combined with extreme pain and fatigue like nothing I can even describe send me back to the doctor to insist on answers. My first doctor prescribed pain meds and muscle relaxers, patted me on the head and said that she had no idea what was causing my pain and numbness, but she was certain that it would be temporary and not to worry about it. In her defense, she did send me for blood work and other than a low vit D level (which she treated), everything came back normal.

I wasn't satisfied with a 6-month prescription for a very addictive pain medication. I wanted answers so that I could get back to my life. I finally reached a breaking point and found a new doctor. But, as with any new doctor's office, it was quite a while before I could get in for an initial appointment. By then I had lost my job and had been out of work for a few weeks. So by the time I saw my new doctor, my symptoms had gone into remission. I had mini flare-ups with joint pain and numbness here and there, but my blood work always came back negative. Finally after about 2 or 3 years, one of my knees became really swollen for no reason. I was referred to an orthopedic doctor to rule out injury. Then finally was referred to a Rheumatologist. Turns out I have had psoriatic arthritis (similar to rheumatoid arthritis) - probably since I was in my early 20's. It had never dawned on me to go see a dermatologist for my skin problems (which are directly related.) Now that I am on meds for the arthritis and amazingly enough, my GI issues have tapered off significantly.

I've been told that I very well might morph into Lupus at some point. I have a bunch of Lupus indicators, but my blood work comes back normal every time. I'm just happy to have answers. And for those who are asking about stress levels - you are actually on to something there. My symptoms do get worse with stress. It's not because stress is the root cause, but because it is an aggravating factor.

Getting diagnosed with an autoimmune disease is a long process. OP, I hope your sister gets some relief soon.
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Old 05-26-2013, 03:41 PM   #42
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Yes, I am a male but I too can related to the listed issues by many on this thread because of thyroid issues and also parathyroid issues. I am posting this article because there is pertinent information that might not have been brought to the attention of many individuals, women and men. Please take a moment and read.

http://www.womentowomen.com/hypothyr...oidhealth.aspx

If I have intruded on this thread to a negative degree, I am truly sorry but so much of what you all have written, I can relate too.

Best of luck to all and may your health improve.
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Old 05-26-2013, 03:56 PM   #43
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how do you find a lymes literate dr. I'd love to be tested. I"ve been dealing with severe back pain, joint paint and stomach problems. They can't figure out the problem. I'm self diagnosing which is clearly making myself worst.
Honestly, be very careful if you decide to see a doctor who claims to be a lyme specialist. There are some out there that are fine but others end up doing more harm than good. Putting patients on hardcore antibiotics for months at a time can end up doing more damage than good.

There are lots of symptoms that can be attributed to a multitude of illnesses including lyme. That being said, I went to a Lyme Specialist in Flemington who was pretty good and ran a ton of blood work. I didn't have lyme or any other tick borne illnesses.
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Old 05-26-2013, 04:23 PM   #44
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I think you said your sister is in New York. One of the top lyme specialist in the country is there. My co-worker brings her daughter there. You can probably do an internet search. Send me a pm if you can't find the name and I will ask my co-worker.

Love the Woman to Woman post. Some of my coworkers go there too.

I would also see a naturopath. This is not the same as homeopathic medicine. My doctor prescribes me an antibiotic if I really need it. My husband was horribly ill 2 years ago (out of work, cardiologist,, ENT, pulmonologist, primary care, neurologist, etc). Finally his neurologist (who I worship) sent him to a naturopath. I recently started seeing one too. I still have a primary care who is find that I also see a naturopath. We both have had to pay out of pocket but it has been worth it because we both feel so much better.

I have also been impressed with this site and their recent book. They have a few other books so they aren't "new" but her story is amazing. It is an anti-inflammatory diet approach.
http://cleancuisineandmore.com/
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Old 05-27-2013, 12:50 AM   #45
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I would recommend an ILADS lyme doc. They aren't in it for the money and many of them have different treatment methods not all involving antibiotics. It just depends on the severity of the disease. Without all of the antibiotics I'm on currently it is likely I would have been dead by now. I nearly died during my last pregnancy and now things are starting to look up. It's amazing how docs will gladly do pro longed antibiotics for acne but not lyme which burrows into each organ muscle and tissue of the body. I do support in making sure you get an ILADS trained llmd and I'm positive your sister will get answers

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