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I need a doctor in the mid-west, looking for referrals or advice

Posted , 8 users are following.

alexis89205
alexis89205

Hi all, 

       I'm looking for a doctor to treat my fibromyalgia. The pain is severe. Yesterday while my family gathered for Easter I could do nothing but lay on the couch with a hot pack and try to sleep. I can't work a regular job. My doctor was treating me but when my gabapentin stopped working he said he could no longer treat me. Right now my psychiatrist is prescribing the gabapentin and an antidepressant that has been shown to help with pain. The only way she can do this is because these medications can also be used for depression and mood disorders both of which I have. She has been the most supportive health care provider I've ever had but she's limited in what she can do because she's a psychiatrist, not a specialist that treats fibro. 

I keep investing money to see doctors who want to run expensive tests and when everything comes back normal they tell me they can't treat me. I break down sobbing and the last time this happened I actually began yelling at the doctor. 

At this point I'm willing to travel out of state, pay out of pocket or whatever else may be required to get treatment. All I hear about pain clinics are horror stories where people have their medications taken away and then are made to do things that aggravate their fibro like physical therapy all without their medication. Then if they are still in pain after months of this (how would they not be?) their medications are returned. Whatever little this gabapentin may be doing for me is at least something and I'm not willing to give that up. 

I'm so desperate for a doctor who won't treat me like a drug seeker. I don't care if the medication is narcotic or not just as long as it works. Why are these doctors not wanting to treat us? Are they just pushing the problem off on someone else because they are afraid that we might actually require medication that WORKS? Excuse my frustration and anger. I'm so jaded about the entire thing and I give up on it until I hit a bad flare and then I get desperate for help. 

Do any of you have recommendations for doctors in the Midwest area? Doctors you have seen and have treated you with compassion and empathy? Any help or advice is so appreciated. 

-Alexis

0 likes, 11 replies

11 Replies

  • gerry09721
    gerry09721 alexis89205

    Posted

    Google -EpicGenetics and BCG and after a quick read call Epic.  and ask if they could suggest an MD .  The clinical trial will start soon ,
  • Meg53
    Meg53 alexis89205

    Posted

    Hello Alexis, I know what you are going through, I too saw several specialist who treated me like a neurotic person. I eventually went to a private health clinic where they tried various pain medications and then put me on low dose Lyrica pregablin which partially helped, I also received Cognitive behaviour therapy that helped a little.

    still not the best answer then I was referred to a Rheumatologist who specialises in Fibromyalgia as well as usual Arthitis complaints, which I have as well in the form of Osteo Arthritis. She tried me on an additional cocktail, including  Lyrica Tramal and Joncia that workd best for me all at low doses. Every person is different so would probably need a different cocktail or not depending on severity of the disease.

    i live in a different country but I suggest you go see a more educated doctor, I would go to a medical centre in a university town like Harvard and ask for a referral to a Rhematologist who specialises in such diseases. If there is a good one in your State better still then you don’t have to travel, just get a referral from your doctor.

    Dom’t go onto oxy codeine doesn’t work for this and is very addictive.

    Best of luck I will send you positive thoughts you are not alone, there are many of us out here suffering, but with help you can reach some relief and live a reasonable life.

    Cheers

    Meg

     

  • christine26761
    christine26761 alexis89205

    Posted

    Hiya Alexis, I’m in Australia so I can’treally  helpyi much,but I have been to a pain clinic years ago and it was fantastic..if you’ve heard negativeness about them over there..it must be very frustrating for you..I am really feeling for you Alexis, gentle hugs from over the seas...The dr’s I have had and some still do are amazing, however, many don’t know enough about Fibro...a Rhumatologist is the best..the best thing I ever did for myself was to take hold of this Fibro myself and gather as much knowledge about it as possible I’ve had it 30years now ..I have even had to take print outs to a doctor once as he didn’t realky know enough..I take Amithriptalyne (think that’s how you spell it, many of us on here take it daily) it’s an old antidepressant that is excellent for blocking the pain at the nerve end and stopping it from travelling throughout my body..the antidepressant is just a bonus..I’ve been on a lowish dose for 28 years now..it really works well, I have it before bed so I have a great sleep..I used to take a higher dose earlier on but as the years  passed by I had at reduced, if I took it through the day, which I did by mistake once, I was like a zombie..I couldn’t feel anything just wanted to sleep, lol. Ireally hope you get some help on here, praying for you..be blessed and have a lovely day..💐😍😍🙏💐

    • gloria62420
      gloria62420 christine26761

      Posted

      Wow Christine I haven't of this med yet.. Im going to bring it up to my Dr. Well I see a FNP.. thanks for the info.

  • gloria62420
    gloria62420 alexis89205

    Posted

    Hi Alexis,

    I understand your frustration. It's been hard for me too. The first FNP I saw prescribed a really high dosage of gabentin which hurt my stomach so bad do went back to a different FNP and said oh no I don't know why she she prescribed you such a high dosage right away... so he lowered my dosage and put me on omperzole.. really.. like why do they not know what they are doing?? Feeling frustrated. Remember to wake up in the mornings and tell yourself today will be better.. I will feel better.

  • rhianna23984
    rhianna23984 alexis89205

    Posted

    Hi,

    I'm a Fibro Coach and have had fibro for most of my life. I would love to help you. I work with people over the phone so no driving and the consultation is free.

    However, if you are wanting a local doctor I recommend finding a chiropractor. They truly believe you and understand that test results aren't everything. They promote natural healing so your body can start healing itself not just covering the issues.

    • gloria62420
      gloria62420 rhianna23984

      Posted

      Thank you for info. To be honest I was scared of trying a chiropractor. I do have s herniated disc and muscle spasm in my upper back. Lately it's my lower back. Dr. Says is fibro but I have hip pain also.. I feel like Dr. Doesn't want to send me for mri..

    • rhianna23984
      rhianna23984 gloria62420

      Posted

      I understand the concern with going to a chiropractor. I can tell you I have never had a bad experience with going and they helped me more than modern medicine. It can take a while to really start seeing improvement but I have found it to be worth it.
  • lori25353
    lori25353 alexis89205

    Posted

    Hi Alexis

    I live in the Midwest.   I go to a pain dr.  I get trigger point shots. But they only help for about a week or 2.  I know what you mean.  About the pain and quality of life.  As for your question about a dr that treats Fibro?  If you find one please let me know.  I take tramadol .  I was on Percocet for years but got off it.  I know how angry you are cause I’ve felt the same way.  Like I’ve always said.  Until you’ve walked a mile in my shoes...

    I really believe that they still don’t know what Fibro truely is.  I can’t take all that medicine.   I’ve tried everything. Everyone is different.  I live in Illinois I do like my pain dr though.  She’s trying real hard to find something to help me but hasn’t succeeded.  

  • lori25353
    lori25353 alexis89205

    Posted

    Just want to add. If a Rhuematologist hasn’t diagnosed you go to one for second opinion.  I strongly urge you to do this.  Some people may get relief from chiros and massages.  I’ve tried it all.  
  • Mom44
    Mom44 alexis89205

    Posted

    Hi, first off I’m so sorry to hear all this.  I have been suffering similar symptoms.  have you been bit or scratched by an animal in the last year or two or come into contact with animal sylvia through an open cut or sore?  How long have you not been feeling well?
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