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  • chronic pain poss fibro jax, fl

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    Old 06-16-2013, 11:26 PM   #1
    dreamsmaycome
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    Red face chronic pain poss fibro jax, fl

    Hello. I have neurofibromatosis and suffer with chronic pain daily. After researching I have several of the same symptoms of fibromyalgia. I'm in need of a good doctor that can treat my pain as well as look into my symptoms to see if I have fibro. I live in jax, fl. I'm on medication for my pain, lately the past couple of monthsvthe pain has gotten worse. If anyone can help refer me to a legit pm doctor I would be grateful. I currently do not work due to the pain and awaiting approval from disability.

     
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    Old 06-17-2013, 08:25 AM   #2
    gmak
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    Re: chronic pain poss fibro jax, fl

    Dear dreams, I have seen neurofibromatosis patients at my pain dr's office. He is a physical medicine & rehab dr, a physiatrist but certainly still an MD & treats acute & chronic pain & works with me & other patients to help achieve the highest level of functioning that can be accomplished using medicines, PT, trigger point injs, braces, tens etc but no epidural steroid injs or surgeries but he will refer to any specialist he deems necessary to help me. For example, he may want a neurofibromatosis patient to also see a neurologist or a neurosurgeon. My dr does see alot of fibro patients. I hope you can find a pain dr that is experienced with both disorders so that the pain can be relieved! I think fibromyalgia is an equal opportunity attacker, imho!Lol But, seriously i have fibro but rarely have any effects from it however when i do i mostly have "aches"all over. My cousin has NF &she describes more " nerve like" pain to me & its awful for her, but she sees a rheumatologist to get it more under control. So, are you having both nerve pain & achey type pain?

    Last edited by gmak; 06-17-2013 at 08:44 AM. Reason: wording

     
    Old 06-17-2013, 12:53 PM   #3
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    Talking Re: chronic pain poss fibro jax, fl

    MThank you for the reply. Are you in jax? It's so hard to find a doc that has any idea about NF. I have the all over pain & the shooting pain is mostly in my leg where I have tumors from the nf. My body is in a constant ache & extremely stiff when I first wake up. I can't sit for long periods, I cant stand for long periods. I'm always tired & sore. I been taking pain meds and recently my doctor has added lyrica to my medication. I think it helps a little, I just don't get with all this pain medication & muscle relaxers why do I still deal with pain that keeps me in bed. I am able to do somewhat more with the meds like dishes, making the bed small stuff. My old pm doc wanted me to take very strong pain medication & yes I was out of pain, I was also out of my mind drooling lol unable to hold conversations so I took them bk and said I will stay with what I been taking. He was so surprised . I just want to be able to function, and not be in pain.

     
    Old 06-17-2013, 01:48 PM   #4
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    Re: chronic pain poss fibro jax, fl

    Dear dreams, No, im in Texas i was just letting you know what kind of dr i see for pain. We have different diagnoses but the results seem to be similar in how we function. I have had 4 lumbar surgs & have arachnoiditis, which affects the spinal nerves & causes pain so i "hear you" well about the nerve weirdness in legs & back pain! I call it "functioning" if i can cook, make bed, light clean, basically being "up" instead of in bed, dressed, not "affected" by my medicine, involved & being " normal for me". I cant shop by myself very often but Im so happy & grateful when i can be the wife & the mom serving my family even if in small ways! My medicine is long acting, timed released so it doesnt do anything to me but relieve pain & without it the pain is too severe to live. I just want to be able to "function" also & live my life, pain controlled too so i understand & want the same thing that you want, its very different to hear "i understand, im in pain too" instead of "im sorry" from others that dont understand no matter how much they care or want to, isnt it?
    I take lyrica too & didnt think it helped much so during a bad pain time i left it at the pharmacy feeling too bad to pick it up. I could not get better,so i sucked it up, got the lyrica & was totally amazed when it stopped the bad days & i started having good ones. I wont ever make that mistake again.
    Im sorry that you're going through this. Are you trying to find one dr that can manage pain & treat NF in stead of seeing a neurologist & a pain dr?

    Last edited by gmak; 06-17-2013 at 02:01 PM. Reason: typos

     
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    Old 06-17-2013, 02:05 PM   #5
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    Re: chronic pain poss fibro jax, fl

    I feel you. Im very lucky to have a very supportive partner. At the same time I feel like im not giving my 50%. Im very happy for the days that I can have somewhat of a normal day and have dinner ready and waiting My sisters and parents dont understand and always try and give me quick fixes they say works for them if they have pain, I try to explain the pain is not the same. They also dont understand if Im taking pain medication and have had facet injections why am I still in pain. I finially had to break it down and explain I will never be 100% pain free the meds just make it possible to get out of bed. People think ok pain patients are on medication for pain so whats the problem why are they still complaining. I think the whole pain medication is misleading ...its not a fix its more like a band-aid. what upsets me is you have people who have absued the system and have false records that make it hard for the real pain patients. I never had a hard time with doctors not belv me, its the world around them. The pharmacy associates, the other wispers. People dont ask whats wrong they ask what you take. Being that its invis its hard for acceptance.

     
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    Old 06-17-2013, 02:34 PM   #6
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    Re: chronic pain poss fibro jax, fl

    I have been a pain patient a long time too & of course i have had the same judgments, but ive accepted that other people do not understand so i dont tell them anymore, i say if im ok or not ok & thats all. i need support from this forum. It changed my outlook when someone else really knew, really understood, really knew what its like! Im very blessed with a supportive family, great drs & the people here who know & dont judge because we are in pain, we are not criminals because we need that bandaid!

     
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    Old 06-17-2013, 08:09 PM   #7
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    Re: chronic pain poss fibro jax, fl

    Thank you again. Its nice of you to reply. I know people generaly join a group or fourm to get answers for personal needs, and yes thats what it is used for. It is also nice to reach out to someone struggling with similar issues. it takes a village. I just wanted to say thank you, and I appreciate you responding to my post. I hope you have a good night.

     
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    Old 06-19-2013, 07:57 AM   #8
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    Re: chronic pain poss fibro jax, fl

    Hi dreamsmaycome,
    i'm so sorry to hear your diagnosis of neurofibromatosis and the pain it is giving you -- and your difficulties in finding a good Pain Management doc. I've checked the 'rules' about listing a doc's name -- and I'm allowed to give you a name of a doc: Dr. Robert Savarese of Jacksonville, FL. I believe the rules limit me on telling you anything more -- Since your diagnosis is related to 'neuro-' problems, have you thought of a Neurologist? -- Dr. Steven Toenjes of Jacksonville, FL. is a neurologist.

    Wishing you good fortune in finding a solution to your pain. I'll re-read the rules again about more info -- but I believe that is all I'm legally allowed to tell you.

     
    Old 06-19-2013, 08:00 AM   #9
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    Re: chronic pain poss fibro jax, fl

    Hi dreamsmaycome,
    i'm so sorry to hear your diagnosis of neurofibromatosis and the pain it is giving you -- and your difficulties in finding a good Pain Management doc. I've checked the 'rules' about listing a doc's name -- and I'm allowed to give you a name of a doc: Dr. Robert Savarese of Jacksonville, FL. I believe the rules limit me on telling you anything more -- Since your diagnosis is related to 'neuro-' problems, have you thought of a Neurologist? -- Dr. Steven Toenjes of Jacksonville, FL. is a neurologist.

    Wishing you good fortune in finding a solution to your pain. I'll re-read the rules again about more info -- but I believe that is all I'm legally allowed to tell you.

     
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    chronic pain, fibromyalgia, neurofibromatosis, pain doctors, pain managment



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