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teacherlauren

Pots And Fibromyalgia

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Hi everyone,

I was recently diagnosed with POTS then Fibromyalgia. I was on midrodine for a few weeks and saw no improvement. I've been on Ivabradine for the past two days and it seems to be helping. Just trying to make sense of all of these diagnoses. At this point, I feel like which is causing which symptoms?

I was first dx with POTS after having a sleep study. The Pulmonologist recommended that I see a cardiologist. After performing the tilt test, I was dx with having POTS. I was put on Midrodine while I was waiting for my shipment of Ivabradine to come in. I didn't think it made an ounce of difference. Hoping the Ivabradine will. :)

As far as the FM, I'm not quite sure that I do have it. After reading about FM and seeing numerous doctors about my pain and chronic fatigue, I decided to see a Rhumetologist about possibly having FM. During that visit, I had a lot of pain and he did the trigger point assessment. He ran some blood work and I made a follow up appointment. At the follow up appointment he said my liver enzymes were elevated and that I had inflammation. I repeated the blood work and am waiting on my results. Then, he said, to quote him, "Yeah... I think you have this... Fibromyalgia thing." He said he wasn't going to do anything about it because I wasn't having pain that day. When I asked about it, he said, "You know, it gets worse with lack of sleep, stress, etc." It felt like such a slap in the face. Like, really? You don't think I know that!? Ugh.... :blink: I also told him about having POTS, and he had no clue what it was. <_<

At this point... I felt like he was not acknowledging FM as a condition. Almost like it was the answer because nothing else fit. His exact words were "from a rheumatic point of view, you have nothing wrong." Then proceeded to make the Fibromyalgia comment. Like POTS, I understand that no two people are alike and it really is a spectrum that differs day-to-day. I'm really just confused... I feel like I've become the "queen" of acronyms... :angry: Then I read all of these people's stories and feel guilty because I know that my pain, ups and downs are no where near theirs... ugh, the empathy...

Sorry for such a long post, I just am hoping to connect with other individuals that have gone through this process... it's so isolating sometimes... :wub:

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I hear what you're saying on the isolation! Welcome at DINET Lauren, it helped me SO much knowing I wasn't the only one trying to fight all those strange symptoms!

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Hi! Sorry you're getting the run around. I'm surprised that the rheumy isn't taking FM more seriously. Maybe its my location, but the rheumys around here take it as a serious and often debilitating illness. There aren't fantastic treatments for it but they at least try to manage symptoms. Have you considered trying to find a doc in your area that has a special interest in FM and is not a generalized rheumatologist? I've found that finding docs that have sub-specialities in the diagnosis I have (or think I should have) has made a world of difference in my quality of care, including their bedside manner.

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Hi Lauren, I'm sorry you're having such a rough time!

Disorders like fibro and POTS can be vague for a lot of providers unless they take an active interest, read up on the latest literature. I agree with Katy that tt might be helpful to find another one that has in interest. Fibro has been linked with small fiber neuropathy which is common in POTS so it might be worth looking into that. What inflammatory makers did he find?

I understand about going to a doctor's office and not having them really understand the full extent of what you're going through.

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This process can be hugely frustrating. You are not the only one though.

I agree with Robin in that small fiber neuropathy is reasonable to investigate. What you need is a good neurologist. SFN is not uncommon in POTS patients, and I would expect it would be considered more common if more patients were tested. There are a couple options that I know of in Florida.

I have POTS and have had SFN confirmed by biopsy, a QSART test, and a QSweat test. Originally the SFN did not give me a lot of grief, but more and more, it is.

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Hi and welcome.

Here is a link to a prior thread with an article link about a possible connection between ANS dysfunction and fibromyalgia.

Like others have said, if your rheumatologist isn't helping you, you might want to shop around for another one. Especially older ones tend to still be of the mind set that it's psychological or there's "nothing really going on" that they can do to help. While there aren't any cures, there are some treatments that can be helpful.

For example, here's a link to an article that was published in the Journal of Arthritis and Rheumatology on the use of LDN in Fibromyalgia that was conducted by a doctor at Stanford University. Too bad so many rheumatologists don't bother to stay up to date and read their own publications.

http://onlinelibrary.wiley.com/doi/10.1002/art.37734/abstract

Unfortunately we are in the position of having diseases that require us to be our own advocates and do most of the research for ourselves to find our own best treatments. Then we take them to the docs who are willing to be partners with us and help us find things that work. Docs who don't fit in that category are best left behind.

Glad you found us and hope we can be a support to you.

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I hear what you're saying on the isolation! Welcome at DINET Lauren, it helped me SO much knowing I wasn't the only one trying to fight all those strange symptoms!

Thank you! I'm really happy to have found a place where other people can understand me! :D

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Hi! Sorry you're getting the run around. I'm surprised that the rheumy isn't taking FM more seriously. Maybe its my location, but the rheumys around here take it as a serious and often debilitating illness. There aren't fantastic treatments for it but they at least try to manage symptoms. Have you considered trying to find a doc in your area that has a special interest in FM and is not a generalized rheumatologist? I've found that finding docs that have sub-specialities in the diagnosis I have (or think I should have) has made a world of difference in my quality of care, including their bedside manner.

Hi! Thank you for your kind words and advice! :D I am seeing a new doctor this week. Yeah, the doctor I saw was voted "Best Rhumetologist" in Florida for 2013. Do you have any advice on how to find a good one? When I called around and asked if they treat FM, all of them just say yes, they do. I guess I'm just picky with doctors. I've spent so much time going to them that I really don't want to waste my time on one so flippant.

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Hi Lauren, I'm sorry you're having such a rough time!

Disorders like fibro and POTS can be vague for a lot of providers unless they take an active interest, read up on the latest literature. I agree with Katy that tt might be helpful to find another one that has in interest. Fibro has been linked with small fiber neuropathy which is common in POTS so it might be worth looking into that. What inflammatory makers did he find?

I understand about going to a doctor's office and not having them really understand the full extent of what you're going through.

I will definitely look into that! Thank you so much! :D

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This process can be hugely frustrating. You are not the only one though.

I agree with Robin in that small fiber neuropathy is reasonable to investigate. What you need is a good neurologist. SFN is not uncommon in POTS patients, and I would expect it would be considered more common if more patients were tested. There are a couple options that I know of in Florida.

I have POTS and have had SFN confirmed by biopsy, a QSART test, and a QSweat test. Originally the SFN did not give me a lot of grief, but more and more, it is.

Thank you! I just looked into it and I have a lot of the descriptions that fit it. However, I'm not quite sure how much of it is POTS and how much could be something else? I do have a great neurologist that I saw about a year ago when I thought I had MS (my mom has it). Unfortunately, to make an appointment with him is like a three month wait. Is there any other type of doctor that would have knowledge of it?

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Hi and welcome.

Here is a link to a prior thread with an article link about a possible connection between ANS dysfunction and fibromyalgia.

Like others have said, if your rheumatologist isn't helping you, you might want to shop around for another one. Especially older ones tend to still be of the mind set that it's psychological or there's "nothing really going on" that they can do to help. While there aren't any cures, there are some treatments that can be helpful.

For example, here's a link to an article that was published in the Journal of Arthritis and Rheumatology on the use of LDN in Fibromyalgia that was conducted by a doctor at Stanford University. Too bad so many rheumatologists don't bother to stay up to date and read their own publications.

http://onlinelibrary.wiley.com/doi/10.1002/art.37734/abstract

Unfortunately we are in the position of having diseases that require us to be our own advocates and do most of the research for ourselves to find our own best treatments. Then we take them to the docs who are willing to be partners with us and help us find things that work. Docs who don't fit in that category are best left behind.

Glad you found us and hope we can be a support to you.

Thank you so much! Yes, he was an older doctor and I was not happy. I think the thing that is most frustrating is that we look "normal" on the outside. This weekend I was so tired and my boyfriend couldn't seem to understand that I had to leave the mall while we were shopping. I feel like my body fluctuates so much it's quite insane. I'm going to see my cardiologist tomorrow and hopefully will ask some questions. Thank you for your support!!

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Lauren,

I try to ask a doc I trust, who's already on my team, "If I was your wife or daughter, who would you take them to for FM?" I find they give more thought to the answer. I also research online in the doctor's bio's. I find the ones that are truly interested in a particular subject list it as well as closely related issues as "special interests". For example, my POTS neuro lists POTS, migraine/headaches, autonomic dysfunction, OH. My geneticist lists EDS, Marfans, POTS, mcas, multiple connective tissue disorders. I also read all the reviews I can get my hands on online. I don't care if the reviews complain about long wait times as long as they say the doc knew what they were talking about and was a good listener. I've actually found with these rare diseases that require very specialized docs, that appts can suddenly take much longer than was planned because some topic comes up that becomes a longer discussion point. I have learned to be patient if my docs run late because I've found that they are good listeners which takes more time and I want them to afford that skill to each patient including me.

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Hi Lauren and welcome. If you have POTS and Fibromyalgia you might consider checking for hypermobility. A lot of people with Ehlers Danlos Hypermobility type are diagnosed with Fibromylagia first because of the pain. POTS is associated with EDS as well, with it occurring in about 60% of patients. You can check your hypermobility using the Beighton score here: http://hypermobilitycampaign.blogspot.com/p/what-is-hms.html

Best wishes on your journey! I hope you can find something that will help your POTS.

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Hi, Lauren!

According to recent studies, Fibromyalgia can be connected to small fiber neuropathy!

There are some studies from 2013 and early 2014, just google the terms - you'll find them easily!

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