Can anyone help?

Welcome @cynthiak06, I know it has to be terribly frustrating to be sent to a new specialist only to be told it's not this or that but while at the same time not providing any help or direction. You mentioned recently being diagnosed with vitamin D and B12 deficiencies, Mayo Clinic has some information on B12 deficiency that mentions that it can cause nerve damage and mood disturbances.

"Left untreated, a vitamin B-12 deficiency can lead to anemia, fatigue, muscle weakness, intestinal problems, nerve damage and mood disturbances."
- Vitamin B-12 - Mayo Clinic: https://www.mayoclinic.org/drugs-supplements-vitamin-b12/art-20363663.

There are also many discussions on vitamin B12 deficiency and neuropathy that you might find helpful. Here is a link that shows the different discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=B12+deficiency++and+neuropathy.

Did your doctor suggest or start a treatment for the vitamin deficiencies?

Don’t lose hope. It may not be rheumatological. Have you considered a neurologist? They specialize in nerve disorders.

I would not dismiss the vitamin deficiencies. Please have them addressed and treated to ‘start’.

Some doctors unfortunately are not very helpful.

Something not spoken about is if/when a mood disorder is had/treated, there is a difference. I’ve seen it happen. Not all doctors just some. They may think it’s the mood problem.

What they fail to realize is physical ailments can exacerbate mood disorders not the reciprocal. I’m not saying it’s what’s happening in your case, but I have experienced, oh you have xyz and they then give me a look with a pause. Discredited before they hear a word.

For example. I had a PCP appointment a long time ago. I had high blood pressure readings that had gone on unchecked (didn’t have a cardiologist at the time, meanwhile was on 2 medications for it prescribed by this internist). i had 2 reasons for visit. I was asking him if i should have an echo (which he did recommend some time before) without reviewing my blood pressure log, he dismissed me and walked out with a student in training without looking at the numbers I held out to him. I was never so dismissed like that before.

I decided I would have to go elsewhere. I changed hospital affiliations and switched all doctors to a hospital where they are transparent with documents etc.

I found a cardiologist. He ended up DOUBLING (maxing out that med) my blood pressure medications and upping the other. HE performed an echo (I had a condition).

That pcp overlooked my issue. He was clearly wrong. It was the best decision I’ve made. Now I only see doctors who see me as a human being and take my issues seriously. I raise my concerns. I do it because I have a problem that needs something. He is the professional. I thought. I was with him since I moved to the area.

All that said, I’m just saying it is not far fetched. Maybe it is in your case, maybe not. You owe it to yourself to not give up and pursue help. He is a new doctor. You may need a doctor with more experience.

I truly hope you feel better all the way around

💜

If the consulting doctor does not schedule a return appointment request a post visit summary and copy
of your records records and labs.You deserve to be fully
informed and don’t give up. Ask your primary to go over
the findings with you.

I have been in a number of support groups for chronic illness.

Sometimes it does take time to wind through the medical maze and figure out what is going on.

But have hope.

Almost all of us who have had these struggles have made progress. We do research, we learn various things and slowly, over time, we wear down the walls of the problems and make progress.

Doctors are human beings. Their skills vary. Some are mediocre, some are talented and some are very talented.

If you are having problems with your doctor, don't hesitate to get a second opinion.

Don't hesitate to find a specialist and not just any doctor.

If you don't know what is going on...it never hurts to go back and examine the fundamentals and serve them.

By that I mean simple, but basic and necessary things. Sleep. We just will not heal well at all, getting poor sleep.

Don't skimp on sleep. If you can get 8 hours every night, get 8 hours every night.

Eat well. Meet all your needs. Many people don't. Get enough protein, minerals and vitamins daily. And also calories. Some folks go so low on calories, they are just not getting enough nutrition daily.

Might want to think about a supplemental protein shake, with minerals and vitamins...daily. Now, obviously, that would have to be reviewed and approved by your doctor. But working hard to get all the nutrition you need...and not just getting through popping a frozen dinner in the microwave.

Hydration. Reality is very few people truly hydrate enough. Very few folks are drinking those 8 glasses of water daily. Can't hurt...can only help. And not hydrating enough can cause a range of problems, including serious ones.

Fresh vegetable salads, fresh fruit...the full range of needs.

I don't know what the protocols are for fibro and exercise...but definitely do whatever is recommended there.

Very sorry about the difficulties. Hang in there.

All problems surrender to time and effort. Keep at it, you will find answers...

If you can't find answers, or enough answers through traditional Western medicine, you might want to consider looking into alternative medicine.

Alternative medicine has come a long way in this country. Some of what was thought to be quackery has now been confirmed by fully professional scientific studies. The US NIH, for example, has recognized Yoga, acupuncture and other natural treatments as having proven medical benefit in various areas and for various conditions.

And, there are now physicians, full MDs, who also explore natural treatments.

One group of them are Integrative Medicine MDs. Dr. Andrew Weil is one.

Here is an article of his on fibromyalgia:
https://www.drweil.com/health-wellness/body-mind-spirit/autoimmune-disorders/fibromyalgia/
very sorry about the difficulties..

best of luck

I know those of us with chronic conditions or who are still seeking diagnosis do not want to spend still more money on medical visits or testing - especially if we have had unsatisfactory experiences or our finances are strained, or even if we’re just plain emotionally fatigued or angered by the lack of help - but I would hesitate before starting any diets, new supplements or increased vitamin doses based on something from a website, no matter how reputable, without first consulting a qualified medical professional that should consider any change in light of medical history and any medications you may be taking. Many forms of various vitamins, for example, exist with some barely bioavailable (in which case they are a total waste of money) to some being highly absorbable. Some forms may interact in dangerous ways with some medications, either enhancing or reducing their effectiveness. Some forms may be outright toxic for the individual with certain otherwise insignificant DNA variants that are not routinely tested for but are more common than one might think.

Yes I am currently on Vitamins for both D and B- 12 . I have been on then for a month now. My Vitamin D was very very low . It was a 9 . I have been on my Vitamins for a month. Still so very fatigue and tired all the time. Don't know if it was my Vitamins making me like that or both my autoimmune disease as well cause it ? 🤔

Autoimmunes predispose us to pernicious anemia, another autoimmune disease. I self diagnosed PA and my physicians assistant wisely sent me to a hematologist. Her tests showed that I do indeed have the definitive genetic and blood markers, requiring daily methylcobalamin injections. I have to buy this B12 from England, as we only have cyanocobalamin, the cheapest synthetic form, through insurance in the US.
My bloodwork has been the same for 20 years. Why on earth did none of the docs I’ve seen for neuropathy, difficulty walking, pain, fatigue, depression etc. notice the obvious?
Please advocate for yourself soon, before your symptoms become like mine!

Thank you for your advice. It is very helpful. I am doing everything to see what I have and how they can treat my illnesses.

@inminn Thank you for your very thoughtful posting. Yes, it is very important to work with a doctor before you start taking supplements and excess vitamins. Thank you.