My Doc Says He Thinks My An Problems Are Heriditary And Not Going To Go Away

[DSM3KIDZ]

Every doctor has their own opinion I just hate hearing news that I'll be facing this forever. I like being lied to only when they say their is a chance it will go away. It makes me feel less defeated.

I might not be posting alot lately I'm trying to adjust to my lifestyle with denial and I don't feel like thinking of this illness every minute anymore.

I hope you'll all have good days ahead. I'll check in when I'm more willing to accept my docs prognosis.

Let me mention he basis this all on my shoulder hurting for unknown reasons for unknown years so who knows. He was very human which I've been waiting to find a nice new doctor so that's good.

He also admitted that doctors can do the most damage to us by not listening to our problems. First doctor to admit other docs are ****.

Dayna

[Guest tearose]

Dearest Dayna,

What sad news to hear that this condition is not going away. I am so sorry.

I haven't been around much lately, is this a recent dx?

Are you getting a second opinion?

I think many of us carry a quiet concern that since our case of POTS has never fully gone away that we too may have a permanent condition.

I am sorry this day has come to you!

I hope that you get another opinion and only stop when you trust the dx.

If you do have a permanent condition, it is my prayer and hope that you will find the right treatment to keep it from progressing fast.

you are not alone,

take care,

tearose

[Donna F]

Hi Dayna,

I am new to this site,and read ur post, it hit home, I have been sick for yrs and docs cant offer me no hope, although i have 3 teens and have to keep on somehow. U seem to be depressed and I by no means am trying to diagnose, but i have had some prob with depression and know that havin a illness can make it worse, so try and keep ur head up and remember, that we have docs that tell us that we could get better today or one told me it may be passed to my kids, and one told me i would end up not livin past a couple yrs. So very skeptical on what they say. I cant lie and say i am not depressed and that is why i joined this site, as it seems bein able to talk with people who understand helps, i wish u all the best and hope that the docs are wrong with ur diagnosis!!

Donna

[DSM3KIDZ]

Thanks Donna F. I'm actually not depressed just scared and feel alittle sad thinking one of my 3 kids might have to endure all this at 27. Know what I mean.

Thanks for your reply, It is a new doc and the other ones told me this is probally viral and should go away or get better I guess this is the first doctor that sorta gave me the worse senerio right off the bat. I guess I'm alittle stunned.

Dayna

[MomtoGiuliana]

Dayna

It is a challenge to adjust to living with a chronic condition. I get very discouraged at times too. Especially days that I do not feel well.

POTS is chronic for most people. That does not mean that it will not be mild eventually--but for most people it never completely goes away--at least this is what my specialist has told me. I have had other doctors (not specialists) say that my POTS will probably go away. I think there is a lot that is still unknown--and staying hopeful that you will improve or that it will "go away" is important for healing. With the right treatments and time you may get a lot better and really not be much affected by it. Perhaps one day there will be even better treatments.

Take care,

Katherine

[pat57]

there are exceptions to everything under the sun. It could be you as easily as anyone else. I believe if you change your definination of defeat, you will not be defeated. BUT I have no doubt what your feeling is normal. Give it some time! I personally believe that what we expect never happens! That is odd I suppose ,but life refuses to be predictable.

[Donna F]

Hi again Dayna

I myself have 3 teens, and they have told me so many diff things, i feel mine is poss hereditary, although i did have only symptoms occ. until i had a complete hysterectomy. I often think somehow they are related to bringin out symptoms. I fully understand u worrying about the kids. I am a single mom and my 2 youngest boys dad is no where in the pic. so the thought of this maybe gettin any worse or poss even fatal, is actually a mothers worse nightmare. I just can say that i have some hope, i saw a new doc lst wk in Pens Fl. and he is so nice, and has it himself, so it is the 1st doc that seems to really care. Best of luck to u and not saying dont listen to this doc, but dont rule out that they are not all fimiliar with this and sometimes make mistakes!!

Best of luck and all my prayers for u

Donna

[Jersey Girl]

Hi Dayna,

My left shoulder bothered me on and off for years before POTS onset almost 5 years ago (probably viral as per spinal tap, but maybe related to onset of perimenopause or BOTH), then my right shoulder started bothering me about 3 years ago and got progressively worse. I ended up getting a second opinion from another orthopedist after my headaches and shoulder were so painful that the right shoulder froze and I needed urgent surgery. It turns out that I had bone spurs that the nerve was hung up on and calcifications in my rotator cuff. A year later I had similar surgery for bone spur on the left shoulder. I have had alot of physical therapy on both shoulders over the last 2 years and have seen a slight improvement in the POTS symptoms as well. I think the pain and discomfort of both shoulders was making my POTS worse. I am still dizzy and exhausted but the pain has definitely improved. Don't give up hope--it's all we have and a positive attitude is essential to any improvement. Martha

[juliegee]

Oh Dayna!

I feel your discouragement....but I am hear to try to cheer you up. I KNOW my POTS is genetic. My Mom, Grandmother and son all suffer and I am so much better than I have been. I have had periods where my tachy was so out of control (180-200BPM), I could barely leave the house for fear of an attack when in public. Major anxiety with this! I've had unbearable headaches, neck and shoulder pain. Somehow it's all related to the autonomic dysfunction...CFS, fibromyalgia. PT can be helpful. I think I'm a little older than you are- I'm 44 now. Maybe age has mellowed this whole thing a bit. But, Dayna, there is sooooo much HOPE.

My tachy is under control, subsequently no anxiety. I live with very little daily pain. A dairy-free diet and Integrative Manual Therapy (a la Dr. Rowe) have helped with this. I just have to remember to take my meds, drink like a fiend, and rest when I'm pooped. I also find exercise helps so much. I try to walk a few miles every day. I started with a block at a time...

Don't give up, Dayna. We love you here. You have three beautiful bright shining faces that are your best reasons for staying hopeful. They need you and we need you, too.

BIG HUGS-

Julie

[lthomas521]

You will probably have to deal with this problem for the time being. But forever? No one knows enough about POTS or related diseases to make that kind of prediction with any kind of reliability. Unless he has superpowers and can predict the future. In which case he is also superrich from playing the lottery, or at least the stockmarket.

[DSM3KIDZ]

Thanks everyone

I do have bone spurs in my shoulder and that's why it hurts. I should send my doc my MRI's.

Julie could you explain what Integrative Manual Therapy is.

Thanks

Dayna

[juliegee]

Hi Dayna-

"Integrative Manual Therapy" or "Manual Therapy" is a special types of PT that Dr. Rowe prescribed for Mack. He did it weekly for a year and it really seemed to help him. He's back to school fulltime. Since I've come down with GP symptoms, I'm doing it too. It seems to be helping as my bad days are getting fewer and fewer.

Google it and try to learn more about it. The PT simply places his hands in prescribed patterns on various parts of your body- this is in an attempt to unblock or open up the body's natural healing process. It's very simple. For the most part, I just lie there. Sessions are one hour in length. I was pretty skeptical, but Dr. Rowe was adamant AND it seems to have helped Mack greatly.

Bone spurs in your shoulders are common with rotator cuff injuries and indicate too much tension and rubbing of bones, muscles and ligaments- all really common with orthostatic intolerances/CFS/Fibromyalgia.

Manual therapy could definately help with this, maybe in conjunction with traditional PT. I'm sure the same practitioner could do both for you. I've also had horrible rotator cuff problems and remember the PT having me do exercises, etc. They helped, but it takes time.

Dr. Rowe also insisted that Mack give up all dairy. He showed us studies that indicated that patients with orthostatic intolerance and GI symptoms (YOU) should try a total dairy-free ban for a three week period to see if there is an improvement in symptoms. Mack and I both did this and have been dairy-free for over a year now. I saw a decrease in reflux, etc. But, most importantly, the inflammation throughout my body seemed to decrease, and I had NO more headaches, neck or shoulder pain. Dairy-free is hard at first but I will NEVER go back to dairy as it increases my daily pain and tummy probs.

Most importantly, don't give up, Sweets! Things are tough now, but I know they will get better. Try new things. Don't accept your new doc's grim prognosis. Too many of us (with genetic origins) have gotten better. I know you will too.

Hugs-

Julie

[DSM3KIDZ]

Julie thank you for the information. I will remain positive and hope all goes well for me. (and you)

As for dairy free, do you than take calcium supplements? also does your insurance cover therapy or do you pay out of pocket?

Thanks for your support

Dayna

[juliegee]

Hi Dayna-

No, I don't take calcium supplements right now as I am suffering with really serious constipation and calcium makes it worse. I try to get calcium through my diet and I walk a lot (weight bearing exercise!) And, yes, Thank God, IMT is covered by insurance. You actually need a prescription from a MD before you start. I can E-Mail you Dr. Peter Rowe's asticle advocating it if you want to show it to your doc. I showed it to my internist, who wrote my prescription.

I'm so glad you're trying some new things and I PRAY they will make you feel better.

Hugs-

Julie

[momdi]

Hi,

Most people who get constipated from calcium (or just plain constipated) do very well w/ a formula that includes a significant amount of magnesium, eg, a 1:1 ratio of calcium to magnesium. Also, try calcium citrate, avoid calcium carbonate. I used to own a health food store, and my customers who tried this always thought I was a genius. LOL.

If that doesn't do the trick you can even find a reverse formula, a 2:1 ratio of magnesium to calcium. In either case, try just one capsule at a time. Calcium and magnesium are very large molecules, so unfortunately, when combined, you don't get many mgs per cap or tab. You can work up to 500 mg of calcium at one time - more than that is a waste b/c that's hitting your maximum absorption.

Good luck,

[juliegee]

Thanks for the advice, Momdi! I sometimes have to take magnesium to get going, in addition to my miralax and colace. Combining it with calcium as a great idea.

Julie