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Living With Fibromyalgia - Online Support Group

Depressed after doctor’s appt

#1

I’m newly diagnosed with fibro. I have a positive ANA, but subsequent test was normal (double strand something) so dr feels that meant no RA or lupus. I asked dr, who is my family dr, if I should see a Reumatologist or Neurologist. He said they wouldn’t be interested in me since no one wants to work on fibro cases, especially with no RA or lupus diagnosis. He said perhaps I should go to a pain center, since he doesn’t give out any drug you could get addicted to (I never asked for any!). He said the most important person to work with me on my fibro would be my psychiatrist since I suffer from depression and anxiety. So, I felt somewhat dismissed and had a meltdown and cried the ugly cry. He said he can help me with gabapentin and Lyrica. Wants me to try gabapentin first. He said, “you know a lot of docs would just tell you you’re crazy, although I think this is a real and painful thing.” So, is this true that rheumotologist wouldn’t be interested in me? So far, this is such an emotional and frustrating journey.

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#2

oh Deb, I wish I could hug you and make it go away. This is a terrible doctor but too often, since fibro is an invisible disease, these things happen. it has happened to me. I am getting supper, but will write you afterwhile. My story is on here somewhere, but I will try to send you a personal note through bensfriends. carolyn

#3

I’m so sorry you are going through this. My story is almost exact. Primary MD refers me to Rheumatoligist who finds ADA blood work but soon rules out Lupus and RA. She tells me she can no longer help me and I should return to Primary. I totally understand your frustration!! I too have several tearful breakdowns in dr office. I came off Cymbalta last year and now I take no meds for fibro. I have Xanax and CBd gummies when necessary but I rarely take them. I went to psychologist for a short while, I started tai chi, I walk 3 miles several times a week. I’m an ex runner so on a good day, I’ll get in a 1 mile run. I find if I can keep my mind alert and my mood upbeat, I can handle fibro pain and when I hurt Sososososo much, I cry. For the past few months, my pain filled days are less than they used to be. I hope I helped you even just a little. Good luck. Jane

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#4

Debstinydogs, I’ve typed medical reports for 24 years, and I’ve heard many doctors be dismissive and tactless with their patients, especially when they are unable to “fix” the patient’s problems, unfortunately. To answer your question, a rheumatologist’s primary concern would be to rule out diseases such as lupus or RA, but many do treat fibromyalgia as well. One of the doctors I currently type for is a rheumatologist, and he offers the usual medications to his patients (Cymbalta, gabapentin, Lyrica), and he says pretty much the same thing to all his fibro patients: you have to be an active partner in your own well-being. In other words, get good sleep by any means necessary (trazodone, melatonin, even CBD), eat a well-balanced diet, and get regular, low-impact aerobic exercise with a goal of 45 minutes 4 or 5 times a week. He does not recommend opioids for pain, but if a patient has been on an opioid for many years and has been using it responsibly, he allows them to continue, but only with a pain medication contract. As for depression and anxiety, my experience has been that I get fibro flares following times of stress, whether emotional, mental, or physical. If, for you, coping with stress involves seeing a psychiatrist or psychologist, then it seems like a reasonable management strategy. I’m sorry you felt dismissed by your doctor! His bedside manner could use some work! Learning to live with fibromyalgia is a long process of getting used to a new normal. I wish you luck in finding what works for you!

#5

Oh dear, i have had this for a long time…you need help, but try to study up on what the alternative docs reccomend…have they checked your vitamin d levels? I was about coping with fibro until my d crashed…since
then it has been harder… i have to take a lot of supplement obr the winter not to crash…

I take a curamed tumeric supplement which cuts some pain and stiffness…
Also magnesium and malic acid are very important for our muscles

Some tools i use, are a acupressure mat, microcurrent unit,

My dr will prescribe some light meds but i do not tolerate very much, so i have searched for supplements and other tools.

Topical pain relievers help me a lot…so a really nagging area of pain i can turn that down to at least a 3 level using either pain erase or soothenol.

I add a tool each year , so i own laser touch 1 , and willow curve…

At times i also get myofascial work
Just know, it takes some trial and error to get your help, but you can feel better and find someone that will work with you…

At one point my dr referred me to a pain clinic, but i cannot take strong meds , so that was not helpful to me.

Ask any questions you have and know you can feel better without that ridiculous dr.

Lj

#6

I feel for you. As others have said doctors like to dismiss fibro. I did get to see a rheumatologist that tried me on a couple of meds & we found Savella to be the best for me. After he got my medication sorted out he told me that unfortunately he couldn’t help me anymore. I honestly think you need a new doctor that knows the meaning of compassion. I had a wonderful opportunity to be involved w/a person my husband worked with. They helped start a site called invisibledisabilities.org and they can help find doctors that work w/our invisible issues. God Bless and know your not alone.

#7

Hey Deb I’m so sorry you’re going through this I pray in faith for healing for all that are suffering in pain I’ve had this condition for almost 4yrs now I use gabapentin ibuprofen and oxycodone .It does help but there will be times when nothing seems to help …just praying gets u through it all. I did have a doctor that treated me and to me seemed like she didn’t really believe in this condition and after awhile indicated that this is all she can do there really isn’t anything else and she doesn’t know anything else she can do to help me. I reached doctors that specifically have experience with this condition that is whom I am seeing now. So research and never give up no matter how bad the pain gets u will go through mood swings and cry …I still have my episodes from time to time. We still haven’t found out a combination that will keep it under control I’ve tried alot of meds. If you feel a doctor is not helping or giving u the support u need keep looking.Ive been through a few that were no help at all.
May God bless and help through this rough time
Love Anita

#8

I am so sorry this happened to you. It happened to me too. Some doctors just don’t " believe" in fibro. They choose to believe it is all in your head and if you would just get up off the couch you would be fine.
Now with that said I now go to a Rhumatoligist. I told him about my previous blood showing I did not have lupus or RA. He said the blood work was only one small part of a diagnosis. I have been with this doctor for about 8 months and things seem to be improving slowly. I tell you this because I want you to know there are doctors out there who will listen to you and who want you to feel better.

#9

I’m so sorry you had such a bad experience with your dr, sounds to me like you need to find another dr. I can’t imagine what makes him think a rheumotalogist wouldn’t want to treat you. My family doc sent me to a rheumatologist and he treated me for a short time, but all he could offer was pills, which I didn’t want (I am allergic and/or sensitive to the vast majority of prescription meds). I went through a series of internists and GPs and finally found a PA who is a perfect fit for me, very much knows that fibro is real and backs me up on my decisions–we are partners in handling my fibro, that is the best situation for me. Everyone I have ever known with fibro has different things that work for them. My sister does a lot of pills and cortisone shots. I rarely take more than more than ibuprophen and CBD oil (wish the other was legal in my state, but not yet). I try my best to eat healthy and get what exercise I can without overdoing it. I sleep a lot. That combination keeps me at a 7-9 on a scale of 15 most of the time–my norm. I function pretty well that way, but it may not work for you. The best thing you can do, in my opinion, is to try things, see what works, and find a dr who will be your partner. Good luck and gentle hugs!

#10

Thank you, kind people, for taking the time to write me back and share your ideas. It feels so good to find a group of people who understand. I will regroup tomorrow after a good night’s sleep, I’m hoping. I want to find a dr who is knowledgeable and compassionate on this subject. That’s my goal. Again, thank you! :two_hearts:

#11

Sounds like you need a new primary doctor. There are rheumatologists that will treat fibro, although some don’t want to be bothered. I just finished with one that doesn’t want to treat it. I don’t understand why he even agreed to see me, waited 4 months to see him only to hear since they don’t know what causes fibro they don’t really have any treatments other than the 3 approved fibro drugs. I was on two of them together for years. Lyrica and Savella, worked for years but had to discontinue the Lyrica. Be careful if you try it, can cause suicidal thoughts and definitely causes weight gain. I have not had an effective treatment for the last 4 years. I did find after 20 years that exercise really does help. With treatments not working I was at rock bottom, the only thing left to try was exercise. I had tried for many years but always gave in to the pain and stopped. This time regardless of how bad the pain was I started with 20 minutes and after 6 months of everyday, I am now doing 45 minutes every other day on an elliptical, alternate days I do 40 min on a total gym and 30 on the elliptical. It does not eliminate the pain but I have found on days that I don’t exercise at all that I feel far worse than on the days I force myself to exercise. Sorry to go on but your doctor was terrible saying what he said. The gabapentin did nothing for me after stepping the dosage up to the maximum allowed dosage and was keeping me in a mental fog, would search for words, say one word when I really intended to use another.

#12

I have given up on the medical system and come to realize my fibro was caused by antibiotics, the worst of them being flouroquinolones like Cipro and Levaquin. Most meds have not worked or have had side effects. Here is a list of what is helping.

  1. Mindful Meditation - lots of free stuff on You Tube

  2. Binaural beats music

  3. Nano liquid magnesium and epsom salt baths

  4. Topical biofreeze and super white stuff

  5. Positive self talk

  6. Gratitude

  7. Compassion meditation

  8. Only seeing MD for must have Rx and tests

  9. Massage/self massage

I could write a book on the stupid things well meaning doctors have said and done. I am reading a good book now called How to be sick that is helpful. Hang in there.

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#13

Thank you for your kind insight! I, too, am going to try exercise. I’m going to check into warm water aerobics and goat yoga. Goat yoga is basic yoga with baby goats playing all around you. You can stop and play with them as much as you want. They are trained therapy animals. {hugs to you}

#14

You have some great ideas, I have heard about goat yoga. I exercise at home, I doubt I would succeed if I had to go out everyday just to do it. However I really love goats!!! If I was going out I would pick goat yoga!!! I would own goats if it was allowed on my property. I have thought about a pigmy goat –would look like a dog in my yard. Alas nosey neighbors use binoculars to see what you are doing. I know the warm water aerobics is good since it helps mitigate the pain while exercising. Good luck, it is by no means a cure all but when you are not at meds at least there is something helping. I am waiting yet again to see a new doctor.

#15

Girl, find yourself a Rheumatologist, then find yourself a new primary care physician. I too have the ANA marker, but no Lupus diagnosis. I have Fibromyalgia and my Rheumatologist is a Godsend.

#16

I’ve been told the same thing re: Rheumatologist. I am seen at the VA, but also went to 2 private Rheumatologist’s. Basically, they each told me because though painful and real, you can live with fibro. You will die with fibro but fibro won’t be the cause. Other Rheumatoid issues can shorten your life. They cause problems with internal organs that can become the cause of death. There aren’t enough Rheumatologist’s to cover the patients with these such diseases and thus that is why they don’t take on patients with just fibro. I have been able to get in to see them just to have testing done to see if I tested positive for anything

other than fibro. Many of the other diseases have common symptoms so it is best to get tested and if negative, still get re-tested at a later date. I also started with Lyrica and Gabapentin; and still use Gabapentin. Same with my BFF who has fibro and is going thru testing for other things. I do have other than fibro and see my GP and have been referred to pain management for areas not helped by current pain meds; all non-opioids. I have had some opioids and really, they didn’t do enough to justify the risk and side effects. It is beyond frustrating to find a care plan and once you do, it can need to change when your body changes. My best help was to learn to take anti inflammatory meds early before a flare gets bad. It has been a long learning process for me to just learn my body and identity muscle pain, bone pain and nerve pain. Another help is to know it isn’t in your mind and you aren’t alone. Use the community of others battling this. Each of us has had different ways of successful pain relief and you can get great ideas and advice. My mom lived with fibro for decades and passed due to COPD. I learned a lot watching her- and I realize now that no matter how understanding or empathetic someone is to our pain and health, unless they have a chronic pain disease you really can’t “get it”. I know my Mom was worse off and now that I’m going through my own pain journey, I realize I had no clue what she went through. I guess I said that to help you have patience with others around you. I may seem to be rambling; I wanted to share

and hopefully encourage you and I just woke up.

#17

You need to see a neurologist.

#18

Can you share with me what they did for you?

#19

Thank you, Jane, for sharing your story with me. God bless❤️

#20

Thank you! :heart::heart::heart::heart: Hugs to you!