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  • Feeling frustrated and on the verge of defeat

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    Old 01-02-2015, 09:59 AM   #1
    Truffles43
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    Question Feeling frustrated and on the verge of defeat

    Hello. I'm hoping someone can perhaps offer some insight to me. I don't currently have a diagnosis, but I know that something is going on. I've had joint pain for many years. Over the last few years however, it has gotten much worse. Last March, I made an appointment with my primary because my pain was now involving my hands. Last May I made an appointment with my primary because I was in such severe pain, I could barely walk. This was brought on by a long day of walking a few days before in the city. I was a little sore at the end of that day, but the next day the pain was unbearable. I was taking 800mg of ibuprofen every 6 hours and it was barely taking the edge off. He then tested me for Lyme disease, and referred me to a rheumatologist. The lymeís test was negative as well. I did see the rheumatologist in June (and that was a disaster Ė I left there in tears feeling like a complete idiot). After spending less than 10 minutes with me, reciting my medical history back to me, she advised me that I probably just had osteo arthritis, however she did do even more blood work Ė all of which again pretty much came back normal. The only abnormal results were Total urine protein was slightly elevated at 15.4 (range 0.0 Ė 15.0), and Vit D Ė 17.6. After lecturing me that pretty much everyone is Vit. D deficient, she advised me to instead take 2000 iuís, and sent me on my way. I was angry when I left there and let them know I would not be back. To tell me I have no pain in areas that I clearly stated hurt, but she said when she examined me it didnít hurt. Her exam consisted of squeezing my fingers on my left hand, and bending my knees. That was it. A week later I received a call from the office manager with the test results, with the promise that she would mail them to me, and the recommendation that I see a pain management specialist because I probably have fibromyalgia. HUH???

    My primary wasnít happy with that visit so sent me to yet another rheumatologist. Not much better honestly. She did one more round of bloodwork testing for viruses. She told me that sheíd never seen anyone with such a low Vit. D level, so gave me 50,000 iuís once a week for 8 weeks. She told me if her labs come back negative we have to assume itís all in my head because she really didnít think it was fibromyalgia. She wanted me back in 6 weeks. I took the vit. D, and to be honest, I started to feel better after about 5 weeks. The pain was only there if I over did it. I was sleeping better, etc. I went back, and my vit. D was up to 23 so she reduced my does back to 1000 iuís per day and said the only thing she can think of is my pain is all in my head. Lose weight and exercise, and I should feel 100% better.

    Ok Ė I know I need to lose weight. But I had this pain prior to gaining all this weight. We are talking some level of joint pain, etc for the last 20 years. They say it canít be rheumatoid arthritis because my tests are all normal. They swear the vitamin D deficiency would not cause the joint/muscle/bone pain, so I really just need counseling.

    I donít know what to do at this point. What I do know is that there definitely was an increase in the severity of the pain when I had the Mirena IUD inserted. I had that for about 5-6 months and finally had it removed. It just wasnít worth it. My gyn says Iím peri-menopausal, but that isnít the cause of the pain. I do have night sweats several times a week, and now a new symptom has started. My fingers have been turning white, and then beat red when going from cold to hot, and vice-versa.

    Any insight would be greatly appreciated. There isnít a day that goes by that I donít wake up with pain in my hands and legs. My knees and feet are the worst. Sometimes when I get up from my desk at work I can bare walk. It takes a few minutes. I have an appointment with my primary for next week to see what his thoughts are moving forward, but am not holding out much hope. Iím so tired of hearing that thereís nothing that can be done and I just have to learn to live with it. Iím tired of being in pain. I do have a lot of stress in my life right now as my mother is battling cancer, and just got over a heart attack, and I am her primary support person. This just happened last year though, and again Ė I had many of these symptoms prior to this.

    The bottom line is, do I have fibromyalgia, or is it something else? Is it really all in my head? Should I maybe seen an endocrinologist since my vit. D is so low? That I would need to push for a referral, because the ones in my area wonít see you without one.

    Sorry this is so long and ramblingÖ.I just feel very lost and defeated at the moment. Thank you in advance for any thoughts/advice.

     
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    Old 01-10-2015, 03:38 PM   #2
    oxygirl
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    Re: Feeling frustrated and on the verge of defeat

    i am so sorry you have had to deal with all that negative experience with doctors. Honestly though, vitamin d can cause a lot of problems if you are deficient. sunshine even though it is cancer causing is not always a bad thing in small increments. I have osteoarthritis and fibromyalgia. I have constant aches. I am also extremely exhausted all the time. my house is all to pieces and that really keeps me upset because i used to be a neat freak. Are you taking anything like cymbalta for pain for the fibromyalgia. i have taken it but am currently on wellbutrin. I am unfortunately physically dependent on opiates which is also a major problem. If you absolutely can keep from going that route, trust me its another hell altogether in and of itself. my problem is I hurt and opiates are short term relief but also bring more pain with the withdrawls. I do not want to be addicted to that stuff anymore. You need to keep on searching for the right doctor. google fibromyalgia specialist in your area. and my vitamin d level was 12! my mothers was 9! we both have fibro. something interesting you may want to know is a lot of people with low vitamin d are diagnosed with fibromyalgia. do a sleep study if you have good insurance. whatever you do never give up because you must not be very old if you are in perimenopause. I am 46. newly remarried and am desperately trying to just get myself together to enjoy the rest of my life. good luck to you.

     
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    Old 01-12-2015, 07:25 PM   #3
    teddybearhero
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    Re: Feeling frustrated and on the verge of defeat

    There is a lot of research on vitamin D and pain being done right now although no large studies of the proper design have been done to prove a connection between vitamin D deficiency and pain. However, there is much that suggests a connection. Given that you are vitamin D deficient, make sure you take the dose your doctor recommended. A vitamin D deficiency can cause other problems you don't need and there is a chance it can help reduce your pain. It has in many people.

    If you still have significant pain after a month or so on vitamin D, see a rheumatologist who specializes in fibromyalgia for a tender point exam. Keep in mind that not all rheumatologists treat FM or know how to diagnosis it.

    You don't need to see an endocrinologist for the vitamin D deficiency. Just follow your doctor's orders and take the dose he recommended. You are probably not getting the vitamin D you need from the sun and it's hard to get it from the food we eat.

    There are several other disorders that appear to travel along with FM (migraines, restless leg, Raynaud's, dry eyes & mouth, insomnia etc). Treating them will help reduce your pain burden. You also need to learn how to exercise and stretch when you have FM. Muscles with FM need different treatment than normal muscle tissue.

    While there is no cure for pure FM pain there are some effective treatments. I take gabapentin which has reduced my FM pain as well as eliminating my bladder "discomfort". I can't tolerate its cousin drug Lyrica so if you can't tolerate one drug, try another. Give your body at least two months to get used to a drug before giving up on it. A rheumatologist experienced in treating FM will know which drugs can help you.

    FM also enhances the pain caused by other disorders and treating them can greatly reduce your pain burden. For example, walking caused me great pain. Finally I put on my big girl panties and had surgery to fuse a joint. The relief from pain was amazing and immediate. I'm still recovering and I know I will still have some pain and stiffness in my feet due to FM, but my pain burden is so greatly reduced.

    No, it's not all in your head but we've all been told that as some point! Tackle each type of pain separately and never, ever assume a pain is caused by FM. Don't let a doctor take the easy way out and assume that either. I've had fatigue from severe right-sided heart failure blamed as FM and the pain from a collapsed left lung blamed as FM too.

    Don't let anyone tell you there are no treatments for FM. There is much that can be done to reduce your pain burden. While you are waiting to see your FM rheumatologist and taking your vitamin D, make a list of all the pains and discomforts you have in your body. Think about this hard because we can get used to feeling pain. After a while all those individual pains sort of become one big haze of pain. So start with your feet and poke around on your muscles and list what hurts. It's likely to be a long list. Let your doctor help you sort through them and look for any patterns.

    For example, restless leg syndrome (RLS) is a disorder that travels along with FM. It can occur during the day too, cause discomfort in the arms as well as the legs and cause pain in them too. There are a number of drugs that can treat RLS and thus reduce your pain burden.

    I've found it harder to treat "fibrofog" and fatigue. Hard exercise may reduce stress and invigorate my husband but it leaves me utterly exhausted and in more pain.

    Good luck and remember you are not alone.

     
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