Epiphany
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Post by Epiphany on Jul 1, 2011 9:45:12 GMT -5
So to make a long story short I have a long term chronic problem with my shoulder blade, neck, upper back, arm on my right side that has bothered me for about 7-8 years. I have chronic inflammation in those muscles that is very painful and constant. I can still do normal activities and I go through times it's better and sometimes worse. I always thought this was related to car accidents I was in and I have seen many different dr's over the years with no long term relief. I also have some stomach issues which also could be related to overall inflammation. I'm in one of the worse times right now and am debating what to do next.
Over the years I have: Seen 2 MD's, 4 chiropractors, massage therapy, physical therapy, a quack of an orthopedic who had no interest in doing anything to find out what was wrong, acupuncture, ergonomic assesment. I had an mri after car accident 6 years ago which didn't show anything at that time.
I don't know if the problem is mechanical (tear, bulge disc, etc), hormonal (chemical imbalance, adrenal, etc) or toxicity causing widespread inflammation.
My possible next steps: Go to bigger city nearby to see ortho or neuro specialist and get mri's etc. Cost - a few thousand? (high deductible) Possibly to be told nothing is there
Attempt elimination diet or anti-inflammation diet spending lots of money on specialized food and seeing a nutritionist. Cost - several hundred?
Continue to try to manage with chiropractic every other week. Cost 30 dollar co-pay for every visit
See specialist dealing more with natural remedies to correct hormone levels, toxicity, etc. - cost of visits and supplements - several hundred dollars?
Dh says I can do what I want and we have the money I'm just frustrated with my experiences so far and hesitate to dive into more dr's, treatments, etc. without knowing which direction to turn and rarely anyone actually interested in getting to the bottom of this and helping me long term. How much to do spend to try to figure it out?
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swamp
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Post by swamp on Jul 1, 2011 10:02:03 GMT -5
I spend whatever I can afford.
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Post by pig on Jul 1, 2011 10:07:22 GMT -5
There's nothing wrong with me (physically) and I spend anwhere from 50-400 dollars a month on supplements depending upon what I'm trying to accomplish.
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Deleted
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Post by Deleted on Jul 1, 2011 10:46:25 GMT -5
How much to do spend to try to figure it out? As much as you can/as much as it takes. I would probably be strategic about it - let's try the dietary changes because you can manage it yourself and it is realtively low cost. If that doesn't work, look at specialists and MRIs, etc. But this is a pretty fundamental quality of life issue you are talking about. What is the alternative? Stop trying to feel better, give in to the pain and let your muscles atrophy, use your savings to buy a gold plated hoverround? All you can do is make a list of possible solutions and start working your way down it.
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endofera
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Post by endofera on Jul 1, 2011 12:24:22 GMT -5
I think you need to see a rheumatologist.
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shanendoah
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Post by shanendoah on Jul 1, 2011 12:38:43 GMT -5
I second the idea of seeing a rheumatologist, or at least try to find a not quack orthopedist. How long did you stay with massage therapy? I underwent a year of massage therapy to get rid of tendonitis in my shoulder (I carry so much tension in my shoulder muscles that they wouldn't relax enough to let the bones seperate enough for the tendons to stop rubbing up against them and being inflamed). Also, while my pain was definitely in my shoulder, the biggest difference was made by working on my neck muscles. I also always refer people to this article (the last in a series about medical tourism, where the author finally found relief) www.slate.com/id/2147763/Do NOT stop being an advocate for yourself. Learn what you insurance covers and what it doesn't. Learn how the appeals process for your insurance (and state laws) work, and don't be afraid to appeal if your insurance denies something you think it should cover. 10+ years ago, I knew a girl who had fibromyalgia. At the time, the MDs kept telling her her pain was all in her head. They gave her anti-depressants, and told her she'd just have to accept being in pain the rest of her life. That was then, now, my grandfather is diagnosed with fibromyalgia for the pain in his legs, and they advertise meds for it on TV. This is your health. Do NOT settle for second best. Do NOT let anyone tell you that you should have to live with pain.
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resolution
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Post by resolution on Jul 1, 2011 12:46:12 GMT -5
I would spend whatever it took. That sounds like a major quality of life issue. I would be careful with doctors that recommend procedures that may do more harm than good. When my dad was having back problems he was getting recommendations for very damaging surgery and was eventually fixed by a chiropractor.
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Epiphany
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Post by Epiphany on Jul 1, 2011 13:16:45 GMT -5
How much to do spend to try to figure it out? But this is a pretty fundamental quality of life issue you are talking about. What is the alternative? Stop trying to feel better, give in to the pain and let your muscles atrophy, use your savings to buy a gold plated hoverround. This made me lol. But yeah, it really puts in perspective. I just get tired of trying, of spending, of no change, of dr's who just want to perscribe meds instead of getting to the root of the problem. Thanks for reminding me to not give up and be an advocate for my health despite the cost. I was in pt for 6 months after car accident several years ago and again last year for 2 months with absolutely no help. They told me to stop working out while in pt but it didn't help so when I was done I went back to working out and do so 4-5 days a week still. Yes it's a quality of life issue and it concerns me that if I'm in daily pain at 31 what will life be like at 61? I want to stay active. My no expense change for today: moved my mouse to try to learn to use it left handed. hmmm... could be helpful. I started a fairly clean anti-inflammatory diet yesterday but it is REALLY restrictive to take it all the way. I think I'll pay to meet with nutritionist or something and a rheumatologist is probably a good idea in the long run. Every dr's visit is 30 dollars (copay) every treatment we have a large deductable. But you are right, it's my health that's important.
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Epiphany
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Post by Epiphany on Jul 1, 2011 13:21:44 GMT -5
Yeah my chiro is about the only one who attempts to get to the root of things. I'm afraid of going to an ortho or neuro because they'll just see and say surgery. The last ortho told me he had no idea what was wrong and I could do an mri to see if it's rotator... uh no thanks. He didn't even really think it was rotator.
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Post by pig on Jul 1, 2011 13:32:29 GMT -5
I'm afraid of going to an ortho or neuro because they'll just see and say surgery.
Are you surprised? That's how they fix things. A chiro isn't going to fix anything permanently.
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Epiphany
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Post by Epiphany on Jul 1, 2011 13:45:49 GMT -5
Not necessarily. I won't know till I get mri's (2k or more dollars) but unless they find something new the possible surgery is fusing my vertebrates together so they stay in place. Yikes! no thanks, I'll stick with chiropractic to keep them aligned. Or I'll spend thousands on tests and they'll tell me they can't find anything. But yeah, I think I'll work from low cost low evasive treatments to higher which is what I've been doing all along but now have to take the next step
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Post by pig on Jul 1, 2011 13:54:57 GMT -5
Sorry to hear about your back. I wish you luck with whatever treatment option you end up choosing.
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endofera
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Post by endofera on Jul 1, 2011 15:20:22 GMT -5
Have you ever had an xray or MRI to see if it actually is a vertebrae problem? Autoimmune problems can begin with a trauma like a car accident. I still recommend seeing a rheumatologist if you don't have any specific test that showed a vertebrae out of place to cause the pain.
If any doctor ever suggests any type of surgery, please get a second opinion.
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lazysundays
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Post by lazysundays on Jul 1, 2011 16:20:35 GMT -5
I would say go all out. 7-8 years of pain already is too much. It's like one of those life questions :what's money without your health? so, make it so you have health and less money, or more debt.
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Peace77
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Post by Peace77 on Jul 3, 2011 22:05:18 GMT -5
I would start by eliminating Nightshade foods from your diet. These foods include Potato, Tomato, Eggplant and Peppers. It also includes spices made from peppers such as Paprika, Cayenne pepper, bell peppers, pimentos, etc.
Do you smoke? If so, consider quitting.
Does your chiropractor put a hot pack (hydrocollator) on you before starting to work? I have found the heat helps my muscles relax and the adjustments come easier. If the chiropractor won't do it, look for another one.
I second the idea of seeing a rheumatologist.
Have you had regular massage? I found a massage therapist who had an office in her home. It was out of the way but the lower price made it worthwhile to drive a little bit.
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Deleted
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Post by Deleted on Jul 3, 2011 22:07:05 GMT -5
I've been in pain for 2-3 years, so I'd say what you can afford. Pain takes so much from your quality of life. I've been seeing a PT, a psychiatrist and my regular doc. They finally diagnosed me with fibromyalgia and put me on a new med. It's taken years but the change in my pain level and functioning as been worth it. Hugs and hope you find a solution soon.
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Pants
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Post by Pants on Jul 4, 2011 9:16:17 GMT -5
rljrdn - I cannot recommend highly enough to go see a doctor who specializes in back pain. I have had chronic pain in my back for 10 years and in that time have seen massage therapists, pt, chiropractors, orthopedists, back surgeons, etc. Most of them tried to help (others made me feel like I was making things up, that's super fun...,) but I also thought the best I could do was to keep it under control with chiro a couple times a week - SO not true, and especially if inflammation rather than vertebrae are the problem chiro could be making you worse! Yes, the doctor is going to try to medicate you, but that's because when you're in constant pain you carry yourself differently, and sometimes just releaving the pain can help alleviate the problem in the long run. But I came out of the first appoint with more than a scrip, he gave me a plan. His theory was that it wasn't my muscles but my nerves, which then made the muscles clench up. I've been working that plan (have had several outpatient procedures and injection series) and last week I was able to go without painkillers of any kind for a full week for the first time in a long time. It has not been cheap - probably two thousand so far, but it has been worth every penny to not live in chronic pain. Just google back pain specialist to develop a list of providers near-ish to you and work with your insurance website to find one in-network.
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AgeOfEnlightenmentSCP
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Post by AgeOfEnlightenmentSCP on Jul 4, 2011 10:02:38 GMT -5
Health is wealth. Be VERY cautious about opiate-pushing "pain management" types. It's addictive, and RARELY can you be helped once addicted to the opiates. I have a family member in this boat-- and the addiction is his worst problem right now (and has been for 40 years). Ruined his life- and that's putting it mildly.
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Epiphany
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Post by Epiphany on Jul 6, 2011 7:55:25 GMT -5
Thank you everyone for your responses and stories. To answer a few questions - I don't smoke (never have) and am not overweight. I weigh 110lbs and workout 3-5 days a week. The steps I've taken in the past week at virtually no cost: - Am on NSAID for two weeks to reduce inflammation to see if I can do a reset to keep it down in combination with the following things - Switched my mouse at work to operate with my left hand to see if that is causing all the inflammation on my right side - Have been doing an anti-inflammatory diet for a week. Not super crazy but includes: no alcohol, no grains, pastas, wheat, etc, no refined sugars, no prepackaged foods, only eaten red meat once, lots of fruits and veggies. A lot of the anti-inflammatory diets conflict. Some say nightshade plants and other things are fine, some say no. Honestly if I have to cut to not having nightshade plants, corn, citrus fruits and dairy as some diets suggest I have no idea what to eat at all! -Started taking fish oil and calcium
I'm going to try to find a nutritionist to work with me on this and maybe do some testing to see if I have sensitive to some foods that cause inflammation. I'd like to try massage but honestly I've never had a therapist be able to work out the knots I have even with repeated sessions. My PT was frustrated because I'd come back every time with new knots. So first step for a month or two will be nutritionist with the diet thing. Next step I'll go back to my MD and get referral for a back pain specialist, maybe rheumatoligist. I'm sure they'll want to do mri's and stuff to rule out mechanical stuff. I had an MRI after car accident several years ago that didn't show anything. And you are right, the money is worth it, my fear and experience has been that even if I spend thousands I still may never get to the bottom of this and then I'm back to where I started. Oh and I refuse to be on long term meds (take this for the rest of your life) when there are other options. Everytime I go to a MD they just push hard drugs and don't want to actually find the root of the problem. My frustration with modern medicine...
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Epiphany
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Post by Epiphany on Jul 6, 2011 8:04:14 GMT -5
Sometimes there really are no great answers. And, spending more doesn't accomplish anything. Many conditions aren't cured but managed. Not trying to discourage you, but the notion that every condition can be cured can lead someone to real quacks or to untested, untried treatments looking for a cure that doesn't exist. At this point, i think you should seek out a complete evaluation, opinion and diagnosis. Once you have that and are comfortable, then you seek the solutions. Surgery, medication, therapy, diet or maybe a combo of all of those. I would also suggest that there are very good pain clinics to help manage chronic pain conditions. Totally agree. Problem is WHO does the evaluation? I've had complete evaluations by a whole host of dr's with no answers. You really have to be in charge and advocate for your own health because I haven't found someone who can look at it all since most are specialized.
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Pants
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Post by Pants on Jul 6, 2011 8:34:25 GMT -5
rljrdn: MRI's, etc. will depend on what you come in complaining of. If it sounds like disc bulge, MRI probably a good idea. If not, MRI maybe not a good idea. I agree that you need a doctor who will help you get to the bottom of the problem. You should make that clear - that you don't want to be on pain meds forever. But living with chronic pain is no fun, do what you need to do to get healthy!
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Wisconsin Beth
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Post by Wisconsin Beth on Jul 7, 2011 8:13:53 GMT -5
rl, my DH doesn't have back problems, he has what I call "tummy issues" because people tend to understand that more. But basically, he thinks he's got a systemic yeast infection. He can't take antibiotics because they retrigger his acid reflux and make him even more miserable. So we're spending between $300-$400 a month on supplements to help him and/or products. That's on top of the mostly organic diet he's eating.
Our doctor is in the loop, more or less, but basically admits that all the resources available to us in-network are going to know less than DH on this and/or push for drugs which aren't so likely to work. So DH is reluctant to see a nutritionist (I'm working on that because I don't think he's eating adequately.) It's really hard on both of us, esp. since we both work full time and have 2 toddlers. We're supposed to be relieving his stress which basically means I'm supposed to pick up the slack. Which in turns drives MY stress up and I take it out on him which ups his stress levels and he takes it out on me. We're in a nasty cycle right now, we both can see that but we can't see our way out of it.
Anyway, I'm rambling here. My advice, get the MRI and the X-rays so you know if you're dealing with bone issues or soft tissue issues. Find a specialist who deals with whatever the issue is (bone or soft tissue) and make sure you've got compatible ideas on drugs/alternative therapies/surgery and go from there.
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Post by pig on Jul 7, 2011 8:24:02 GMT -5
Doctors are not miracle workers. It has been estimated that over 80% of "the root of the problem" is never known or unidentifiable. Our bodies aren't like cars.
What NSAID did they put you on?
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Pants
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Post by Pants on Jul 7, 2011 8:50:49 GMT -5
WI Beth - I PM'd you.
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wvugurl26
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Post by wvugurl26 on Jul 7, 2011 8:52:08 GMT -5
I have spent over $1500 on doctor copays, drug copays, OTC drugs and more expensive contacts going back to mid January to try and fix breathing and allergy issues. I am mildly improved and have been backsliding in the past 2 weeks. It is miserable not having the answer. I think allergy shots would help but they will not start those till late winter due to pollen levels and my severe allergies. I am about to get a more expensive apartment bc my current 1950s era apartment is doing me no favors.
I have had a metabolic panel, chest ct scan, sinus ct scan, echocardiogram, EKG, 2 rounds of allergy tests, pulmonary function tests, and repeat pulmonary tests while exercising. I've seen allergy doctor 4x, a cardiologist and a pulmonary specialist. I go back to pulmonary later this month. I wish they would find an answer bc breathing matters and I don't have a bubble to live in. The process sucks but medicine is part art and part science.
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Deleted
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Post by Deleted on Jul 7, 2011 9:15:20 GMT -5
I'd spend everything I have and could get if it would bring me good health. I'd really rather have health than wealth. The difficulty is recognising if there is no "cure" for what ails you. Good luck.
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Epiphany
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Post by Epiphany on Jul 7, 2011 9:22:11 GMT -5
wow wvugurl, I really hope they find something. It must be really tough to struggle with breathing. My best friend just spent the last year "in the process" to find her long term ailment - consistent headache for a year. Finally just diagnosed at mayo clinic with New persistent headache disorder. Sounds dumb but they finally found some meds for her that are starting to work. I understand the process but I have not been successful yet, rarely find a dr. who wants to work hard to get to the bottom of it, and the money is insane for testing and such. So yeah, I'm ranting a bit They give me naproxen (NSAID) but I only take it for a few weeks when I'm really bad because I start bruising really easily if I take it longer than that. And I really thought I was at the I'm just going to have to live with this point but I realized I still can do a lot to try to fix this and the money is worth it to try
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Wisconsin Beth
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Post by Wisconsin Beth on Jul 7, 2011 9:23:49 GMT -5
Got it BSB and I PM'd you back.
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wvugurl26
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Post by wvugurl26 on Jul 7, 2011 9:36:09 GMT -5
It is frustrating but it sounds like you have a lot of good options open to you rl. My doctors are supposed to be among the best on the east coast and the allergy and pulmonary doctors are involved in research so I hope they find me an answer. They no longer think its all my allergies so I am waiting on results of last pulmonary tests from last week. Thank god for excellent insurance.
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wvugurl26
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Post by wvugurl26 on Jul 7, 2011 9:37:42 GMT -5
Beth I hope your husband finds a solution. I know its hard to see the cycle and yet keep repeating it. Changing responses and habits is hard.
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