1. < Bones, Joints & Muscles

Dismissing doctors: How do you find a doctor who can help?

Posted by mahenoor108 @mahenoor108, Mar 28, 2022

I have had chronic pain since 10 plus years, I’m 34 now a mother to a 4 year old and life is getting harder day by day
Ana titer positive
D dimer high
All autoimmune panels negative
No other signs of inflammation
But when doctors examine they can feel the muscles are stiff, contracted, rigid.
They think it’s fibromyalgia but nothing has helped me. Since the past 6 years I’ve been on different medicine, therapies everything.
Every other month a new symptom appears and now I don’t know what to do.
Left thigh is the oldest problem, I have sore rigid muscles and I don’t even know what relaxed muscles feel like.
Some doctors think it’s some autoimmune but are unsure.
My new symptoms in the last 2 months
Extreme anxiety/over eating a lot due to anxiety
Insomnia very recent cannot sleep at all
Contracted muscles/ rigid muscles all the time unintentionally I try to realease as soon as I realize they are contracted
Forgetfulness - forgotten a lot of important times of my school/college life
Brain fog
Sleep talking very recent
Pain in my left knee
As soon as I wake up an put my feet on the ground they feel extremely sore.
My neck is tilted to the left side all the time because of extreme pain
In the past I have had high crp
But not anymore.
Can someone please help me.
I can’t function most days

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windyshores | @windyshores | Apr 25, 2022
In reply to @dance4life "I indicated on my prior email that the Zio x showed a mid range level. Not..." + (show)
@dance4life

I indicated on my prior email that the Zio x showed a mid range level. Not to worry from this my Cardiologist said. It's high level on the graph that would concern him.

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I don't know what that means. In terms of frequency of afib.

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dance4life | @dance4life | Apr 25, 2022

Yes, frequency of A Fib. Wore the patch for 2 weeks. Did not record for several days within a 2 wk. period. This patch is only interested if one is at a high level of A Fib. It's around a $75.00 patch covered by insurance. If the chip inside the patch records high, then the patch has to stay on longer. However, Doctor should not recommend taking a blood thinner drug of many names out there until the patch recordings are shown to him. This patch can be recommended by a good Doctor for many seasons of the year. Recordings vary by seasons.

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callalloo | @callalloo | Apr 25, 2022
In reply to @dance4life "Ok. I'll try. You came in on my site and I am in partial experiencing what..." + (show)
@dance4life

Ok. I'll try. You came in on my site and I am in partial experiencing what you are having now. First hand I see so much going on with you and I would not give up on finding a solution. Never give up. Have you heard of Stem Cell replacement ?? Tony Richards the motivational speaker, nationwide presenter, had this done and he swears by it. Your insurance may not cover it ?? He had difficulty moving about. Was focused on his legs and spine. Check online as to what he did to improve his life and his speaking presentations. Other than that...............this is something that is based on Neuropathy, perhaps ?? Many Doctor's would like to view your dilemma. Hope you have adequate insurance ?? Don't go into a hole on expenses. My feet sometimes lack feeling. Have toe fungus from working in the garden for 25 yrs.. Fungus can inhibit walking. I do my own toenail clippings in order to wear shoes. Had a Spinal Tap in Chicago as a Jr. teen. Found nothing for me to worry about. Had a bad fall in December, 2019. Over waxed floor in a restaurant and I did the splits. Never have my legs done that. Was not wearing heels, but 1 in. heel sole. Turns out a injured "ham string". Pelvic bone moved out of socket as well. Many football players have ham string tears. Because I have arthritis, this recent injury has come back to limit my painless walking, stooping, kneeling or simply trying to stand after down on the ground. I have learned to do a spider lift by moving my hands to prop me up closer to my feet (hence a spider formation). Takes a lot of strength in one's arms to lift your body up. Painful, yet I dread falling flat on the ground. If you are gaining more weight..................this does not help at all. You need a lot of strength to get your body to cooperate. Extra pounds makes that difficult. Crawl towards a door frame, chair. object hard enough to carry you to an upright position.

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With all due respect, this is NOT your site as you referred to it above. It's an open forum for people with, or caring for people with, medical conditions and hoping to help and be helped by others' experiences and knowledge.

I'm not certain if you have a different impression. But a person posting a topic does not have 'ownership' of the thread, yet in perpetuity, That is, this is not, for example, an owner moderated Facebook page and I most earnestly trust that it won't turn into one. lol

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dance4life | @dance4life | Apr 25, 2022

I have never been on Facebook or Twitter. Not on Linkadin (sp?). Do not like their format. Am not one to get into personal issues, but since 2014 I have been greatly abused by Doctor's. Still, I have to have them or else I die. I will try better to tone it down and not portray myself as a Counselor. I seek truthful medical advice to better my health. I become too emotional towards being a specimen. You have witnessed much more than I. I am sorry for the tete a tete. I have always tried to help others and wished I had been a nurse. I do volunteer at a hospital.

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7lilsnkr | @7lilsnkr | Apr 25, 2022
In reply to @dannybee "@callalloo, hi there. I was wondering if you've ever had ultrasounds of your legs. When you..." + (show)
@dannybee

@callalloo, hi there. I was wondering if you've ever had ultrasounds of your legs. When you have a DVT it definitely hurts. I had what they call a chronic DVT in my left calf. My d-dimer was high. I could tell from the ultrasound techs look that something was wrong. It's really weird but ive always had pain in my left leg from when I was a teenager. When I would have my period my left leg would just ache. Then last year they finally found it. It took 2 separate ultrasounds to find it. I started on Eliquis. I'm 70 btw. I know you are full of inflammation. It sounds like fibromyalgia. I also have that and diabetes, plus osteoarthritis. Doctors don't want to prescribe pain meds. At least that has been my experience. They have tested for lupus?
The last few years, I give my Dr one year to help me, or openly be proactive with me, then I move on to another Dr. I'm tired of being pushed aside and not taken seriously about my symptoms. I do my own research. With the advent of the internet it is easier. Remember, you are your own best friend. Your Dr works for you, not the other way around. If you don't think he's working for you, you can move on. Best of luck to you and God bless. Judy

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This is good advice! My problem was going to different doctors is they run the same tests, new tests and do the same PT and come up with same answers just in changed verbatim while the medical bills keep piling so high you can't be seen anymore unless it is an emergency. UGH

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7lilsnkr | @7lilsnkr | Apr 25, 2022

What do you make of this response back to me when I asked for the doctor who diagnosed me with Fibromyalgia, a torn rotator cuff with a split bicep tendon after I referred myself to him after seeing an orthopedic and Internal specialist doctors for 1 1/2 years who didn't find these 3 issues out in that time?! Just thoughts on this.... Thanks
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2 replies
windyshores | @windyshores | Apr 26, 2022
In reply to @7lilsnkr "What do you make of this response back to me when I asked for the doctor..." + (show)
@7lilsnkr

What do you make of this response back to me when I asked for the doctor who diagnosed me with Fibromyalgia, a torn rotator cuff with a split bicep tendon after I referred myself to him after seeing an orthopedic and Internal specialist doctors for 1 1/2 years who didn't find these 3 issues out in that time?! Just thoughts on this.... Thanks

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@7lilsnkr Rheumatology might deal with the fibromyalgia but not the torn rotator cuff or split bicep tendon, I would think.

Unfortunately, there are a lot of problems that doctors cannot do much about. Sometimes they kind of pass you on to someone else. It can turn into a wild goose chase! (I have tried to work on accepting some symptoms to avoid that!!)

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Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 26, 2022
In reply to @7lilsnkr "What do you make of this response back to me when I asked for the doctor..." + (show)
@7lilsnkr

What do you make of this response back to me when I asked for the doctor who diagnosed me with Fibromyalgia, a torn rotator cuff with a split bicep tendon after I referred myself to him after seeing an orthopedic and Internal specialist doctors for 1 1/2 years who didn't find these 3 issues out in that time?! Just thoughts on this.... Thanks

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Hmmm... I have usually gotten those types of replies by phone, from the doctor's staff.
I will say that the specialists each have a narrow lane for treatment. This allows them to keep up on the very best and latest information and treatments for a smaller range of conditions.
Rheumatologists often limit their practice to rheumatoid arthritis and similar conditions like Lupus, Sjogrens and similar.
Fibromyalgia and osteoarthritis are usually treated by a primary care provider, sometimes in conjunction with PT or pain management.
Torn rotator cuff/biceps tendon would be in the orthopedic surgeon's "lane" if surgical treatment is warranted, PT otherwise.
If I got this, I would take the rheumatologist's diagnoses and any images and test results back to my primary and discuss next steps.
What have you decided to do?
Sue

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7lilsnkr | @7lilsnkr | Apr 26, 2022

Thank you so much Sue for your enlightened response to my post, I really appreciate and understand quite a bit clearer to it. I feel a bit humbled which is a good thing and to let you know I did just what you said. Although still not fixed I have gained clarity on the issue. Take care Sue and again I thank you most kindly.

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mikaylar | @mikaylar | May 1, 2022

Have you been tested for Lymes?

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