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Recent Fibromyalgia diagnosis. What type of doctor do you see for your fibro?

Posted , 5 users are following.

SoCalTina
SoCalTina

Hello All. I was diagnosed with fibro (& PMDD ) in October and I feel a bit overwhelmed and lost. I am hoping someone can shed light on this for me. After several years of being told I was "fine" and having major medical anxiety because "something" was wrong, I was diagnosed with fibro. It was one of the best days of my life. I know that sounds weird but I finally had a direction to go, and for me that was amazing. No more googling single symptoms because I didnt realize at the time that they were all related. So now I feel as though I've exhausted my local library and it seem my doctor as well. I have been frustrated because when I ask questions I get told I need to take a class. My health care provider has many classes but none for fibro. I've asked to see a specialist and my doctor said that there's no specialist, Rheumatologist at kaiser does not see people with fibro. So I am now at the point where i am desperate for answers and am looking at going outside my health care network. So does anyone see a specialist that is knowledgeable about fibro and all of the wonderful challenges it brings? I just had my first major round with breathing issues and it scared the daylights out of me. It has been my first flare since i was diagnosed and on medicine so it caught me off guard. I feel stupid but I now feel I need to call my doctor and tell her I'm fine and see if she wants to cancel the scheduled stress test. I just wish I could talk with someone who could tell me what to expect... my GP seems to be at a loss. Does anyone have kaiser, So Cal? Or know of a type of specialist that can help me. Thank you, in advance.

0 likes, 14 replies

14 Replies

  • diane3579
    diane3579 SoCalTina

    Posted

    I don't see anyone because I couldn't find anyone that treats it. Most of my "need" for a doctor is to help me connect symptoms with fibro and recommend treatments, so I've been reading a lot. Have you read The FibroManual? Fibromyalgia and Chronic Myofascial Pain: A Survival Guide is also excellent.

    What are you primarily looking for in a doctor?

    • SoCalTina
      SoCalTina diane3579

      Posted

      I have read several books, Fibro Manual was fantasic, and many website articles. My problem is that I dont know enough to know whether the information or treatments are any good. What I'm reading sounds great, but my hope for a doctor is to have someone guide me in the right direction and help me recognize what is going on with me what is good information vs what may not be... seems like every book offers a different protocol. I have not read the second book you mentioned so I will do that. Thank you.

    • diane3579
      diane3579 SoCalTina

      Posted

      I am hearing from a few people that the manual is very good and was recommended by their doctors. Thing is, there aren't that many doctors that know how to recognize the symptoms and put them all together. And there are fewer who know what to do about them. But it is rheumatologists who normally diagnose and treat. I was referred to someone who didn't, but I kept looking around and finally did find someone. It didn't work out, but if you want to see someone, I'd keep looking.

    • SoCalTina
      SoCalTina diane3579

      Posted

      knowing how to recognize the symptoms and putting them all together is definitely my struggle. I will purchase the Fibro Manual, instead of getting it from the library. I didn't want to purchase anything partly because I haven't told my kids (15 & 18) I was hoping to "fix" what was wrong and be done with it. It sounds like that was wishful thinking though. Thank you for your help!

  • sophies77
    sophies77 SoCalTina

    Edited

    I cant help in regards on who to see, but your post at the start sounds like me right now.. they have mentioned fibromyalgia but they are treating it at the moment as health anxiety because its very early days but I too feel theres something wrong with me. do you ever get chest pains with yours? I get many other things too but thats my most concerning despite tests telling me I'm fine.

    • SoCalTina
      SoCalTina sophies77

      Edited

      Yes. I just had my first issue with breathing problems since being diagnosed. I had chest pains, headaches and my blood oxygen level was at 80%. Before I was diagnosed I used to see the dr about one or two things that i was having issues with and dr would treat the issue or say it was normal and nothing to worry about. After a few years of that I started tracking everything ( chest pains, other aches and pains, my cycle, weight lose or gain, etc) and then got a new doctor. I was able to give her four pages of what i was going through and roughly when it happened and how long it lasted. I questioned her about fibro and lyme disease. At my next appt she told me i had fibro. Things I didnt think were related have turned out to in fact be related. My anxiety was pretty bad but i have PMDD too and that contributes to the anxiety. My anxiety has improved though since I've been sleeping.

    • sophies77
      sophies77 SoCalTina

      Posted

      thank you very much! I'm starting an antidepressant today so I'll see how I go with that and then go from there.... I'm also starting a diary for my own peace of mind and keeping track.

    • SoCalTina
      SoCalTina sophies77

      Edited

      A diary is a great idea. As soon as I was diagnosed I stopped keeping track of everything. I was just so relieved to finally have an answer, but I will have to go back to doing that so I can figure out my triggers. Thank you!

  • RachRoux
    RachRoux SoCalTina

    Edited

    Hi sorry to hear you are struggling but i definitely understand the feeling of relief after finally being diagnosed.

    I have had fibro for a few years and it is managed through my doctors and physio as I am already on a lot of medication and don't want to go on more.

    My physio tries to help me stay as mobile as possible and swimming is the best way as it is very low impact so doesn't hurt the joints. My doctor recommended cold water therapy as it is supposed to be really good for treating fibromyalgia so i try to swim in cold water, take cold showers etc.

    How is works - The cold constricts the blood vessels and decreases blood flow which reduces inflammation.

    I found the most helpful thing for me was finding my triggers. I kept a diary and made note of everything and when my symptoms got worse and tried to see patterns so i knew if there where things i could cut out or change etc.

    My biggest triggers are lack of sleep, weather or temperature changes and stress. Obviously you can only control triggers so much but it's good to be aware of them.

    I avoid foods that cause inflammation and drink lots of water.

    I'm based in the UK so can only give you advice on what has helped me. I hope you are able to find a dr in your area.

    The Fibro Fix is a useful read aswell as the Fibro Manual.

    Sending positive energy

    Rachael Xx

    • SoCalTina
      SoCalTina RachRoux

      Edited

      Thank you Rachael! Cold water therapy makes sense. Do you find that your muscles stiffen up? I haven't tried cold water, but I have noticed that if I'm outside and it is cold, especially if there is a lot of moisture in the air, I stiffen up quite quickly. I will try cold showers and when the world opens back up will try the local pool. I'm pretty sure they offer classes...

      Until then I will get a journal going too, maybe a spreadsheet, so I can identify triggers.

      Thank you again.

  • susaln62031
    susaln62031 SoCalTina

    Edited

    Hi I saw a rheumatolgist at Poole Hospital,Dorset UK.He confirmed that I had fibro he was very understanding and gave me alot of good advice and emailed me info on fibro.

    I have also found a group on Facebook called stress and fibromyalgia it is very helpful

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