KareBear

Katy, i'm sorry you have this daily! Is yours from inflammation in the muscles?

E. soskis, I know that heaviness feeling too, it's like your limbs suddenly weigh 100 lbs each. Maybe I will wake tomorrow with it gone and some other weird symptom to replace it lol.

Welcome to the forum! I dont believe I have ever had my C reactive protein checked but wanted to welcome you here. I'm sure others here can help on this subject though

Thank you Alicia. No ones problems are trivial here. It's all life altering and that's hard no matter what the cause. You were in no way whining, we all need someone to talk to when things get tough and I'm glad you came here for that. I'm sending (((hugs))) your way to help you get through this

I know we all get this at times especially after activity but today I have had severe muscle weakness all day. It's the weakness you get when you overuse a muscle but I haven't done anything. When I try to walk my calf muscles even burn, any muscle I use burns when I move it today and the weakness is constant.

I dont typically walk around much except to another room in the house and back but even this is difficult (more difficult than normal) today. Does anyone know what causes this or what can be done to relieve this symptom?

Alicia,

You have every right to be mourning the loss of your life before illness, it's something those around us cannot comprehend most the time, but I know what you are feeling and it is the hardest thing to go through. Even when we try to focus on other things, our bodies constantly remind us we are sick.

"Suffering in silence" is not something you should have to do. It's hard keeping everything bottled up inside. Venting is important and getting support especially on the rough days is needed, so you dont have to apologize here, we understand. If you have friends or family even willing to listen so you can talk about things bothering you, then take them up on that. They may not be able to relate or truly understand what you go through but sometimes just a shoulder to cry on helps.

I'm sorry you are going through all of this right now. Like looneymom said, a pet can do wonders. I have a 4 month old puppy who is my constant companion and does wonders for me. I dont know what I would do without him.

Hang in there. I hope things get better for you soon!

Freaked, this is an interesting idea. I even posted a topic in early Oct. about fevers. When I am feeling my worst I always feel feverish. Maybe your theory would also explain why we get migraines?

You sound like a wonderful dad! It made me tear up reading what your son said so I cant imagine how it affected you. I dont have the expertise on the impact of family like others do on here, I do believe that though the way you spend your time with your son is changed, you can make the time together just as special if not more so. I'm sure taking a few shots with him meant a lot to him. Do you think you can do things like playing "horse" but with dad friendly rules?.......like all shots from a laying or seated position? Maybe with a lowered goal so you dont have to use so much strength? I bet you can find some fun ways to play.

Anyway, just a thought. You are doing your best and your son sounds like he really cares, its probably harder on you than it is on him, parents naturally want to do everything with/for their children. You ARE a wonderful dad!

Do you still have your gallbladder? Has that been checked with CT or ultrasound recently?

Do you have a good Internal Medicine doctor in your area? If you have a highly recommended doctor in Internal Med or even a different Family doc can possibly help. The reason I say this is because they see so many general illnesses and aren't focussed on just one area of the body so they tend to put the puzzle pieces together better and set you in the right direction. You may have to search around for one that comes highly recommended or one a friend may suggest but that's what I would try.

I'm sorry you have all this happening to you, it sounds miserable. Hang in there!

Hi Margie, it sounds like your trip to the hospital was a miracle for you! How exciting to be feeling so wonderful. I agree that if a med helps like this one is helping you then the other stuff that goes along with it (side affects, etc) isn't worth worrying about right now. It's so great to hear stories and updates like these! Congrats on feeling great, I'm glad you shared this!! :) :)

Hi Milly, did it happen anymore today or was it just the one episode? I'm not sure what that is either but hope you're doing better now. Take care!

Hope, I like your response to why you're using your cane!! It's perfect

I wanted to tell you that you aren't alone! I went to Mayo, Rochester MN, all the way from south Texas!! I already had a POTS diagnosis but was hoping for not only confirmation of my diagnosis but also treatment options as we had exhausted all meds for POTS and I was no better. I was there a week with non stop testing 4 days straight. I was told by the specialist I did have POTS and "SEVERE adrenergic dysfunction" (that was exact words and in report).

After everything the specialist told me that I had already tried all the standard POTS meds with my local doc so he didn't have anything more to offer.

So I understand how you feel. I didn't have a very good experience either.

gjensen, that is very hard and I struggle with the fact that mentally I can and want to do everything, but physically I cannot. It's like an internal war with myself. I'm sure you paid the price for pushing yourself yesterday. Despite Moments of normal BP and heart rate, the dysautonomia symptoms are still there for most of us so you aren't alone.

When I first became very ill in 2007, I was hospitalized, lost my job, was bedridden and everything seemed to crash down around me. I was quite emotional and depressed for a while. The first year was the hardest. Then I started to learn how to accept this new life and learn that I still had purpose here and there was a lot I could do to be productive without my physical body. I learned to accept help better from others too. It's a process and takes time but it truly does get easier so hang in there and realize that your life may be altered but thats all it is is altered and you can adjust to it. I know what your are going thru and it can be tough.

(((((HUGS)))))

Regaining the physical activity you mentioned certainly isn't too much to ask and hope for! Being able to do the simple daily things would make a world of difference to us. I hope the new med works well for you, keep is posted!

Fingers crossed tonights the night for you!!!! Maybe a sleep aid will help get your body back on a sleep schedule again. Sleep well! Zzzzzzzzzzzzzzzz

I was prescribed mestinon by the Mayo clinic in Rochester MN so they must believe its benefits outweigh the risks, at least I assume so. I guess I trust their judgement since they specialize in POTS.

I think the initial Bp and heart rate change immediately upon changing positions is common, then the body tries to adjust for the gravity and thats the part they are looking for when looking at ANS problems.

I'm not sure if you have to be denied first before a lawyer takes your case, it wouldn't hurt to give one a call and ask. I applied first, got denied, then got the SSDI lawyer. Maybe someone else here will know the answer to this.

As far as your husband's income, that doesn't affect you at all. It is solely based on you. Your past income and how much money you have paid in from past paychecks. I believe you can find out how much you would be eligible for through social security. They dont take any other family members incomes into consideration so that's not a problem for you.

And if you have children or dependents you also receive money for them if you get approved for SSDI.

About the school loans, there isn't much you can do about them but pay. If you default on student loans they will withhold the funds from income tax returns and if you have disability payments they will take the money from those too. Its unfortunate that they dont have more help for the disabled especially when it comes to loans.

I have been on SSDI for 5yrs now. You can go online on the social security site and fill out the lengthy application to start the process. Do be prepared to possibly get denied the first time around, it happens to majority of people, but then you can het an SSDI lawyer who will help you win. The lawyers only receive money if you win and then the lawyer gets a percentage of you claim or the max they can charge, there is a cap (max dollar amount) they can charge (it was about $2500 for me I think). The money is taken out of your first check so you never have the money taken from your account really. The first check will back pay you from the time you originally applied, so if you apply today but dont win your case until 6 months from now, they pay you for 6months of back pay and the lawyer fee is taken from that amount. You do have to be disabled for i think 5 or 6 months before disability will kick in and pay.

It can be a lengthy process so be prepared. It can take months or years so sometimes getting the lawyer to help is a good idea. To answer your main question though, yes you can get disability for your condition though not technically for "POTS". For me I am labelled as a "heart condition" so its based on your symptoms and what disables you. Good luck!

What a beautiful voice! Was that you on violin in the background? Thanks for sharing

I think how surgery affects us can be different for different people. I did have earlier surgeries years ago that I did fine with and my symptoms did not get worse afterwards, they stayed the same. I wonder if because this surgery was major compared to others it could be why it affected me more. So, if you do have to have it removed you may do just fine. I always just made sure the anesthesiologist was aware of my POTS before the surgery.

My symptoms weren't that alarming which is why it spread so far before it was caught and I have been told this is common with ovarian cancer. I had pain and bloating mostly which worsened over time until the pain was quite severe. Also my menstrual cycles eventually became irregular which was abnormal for me. I had ovarian cysts before and knew the pain of those and this felt similar at first so thats why I wasn't concerned but over time the pain changed and I could tell it wasn't cyst related.

You are at a huge advantage that they are watching the complex cyst closely, that way if it is something they will take care of it early. I will pray its benign and you wont need surgery! Take care and let me know how it goes

Hi Jennifer, I'm not sure how my Bp was during the surgery but maybe because we are laying flat and getting lots of fluid (they give fluid before the surgery too) it may keep Bp stable enough. I did have a hard time waking afterwards and that was Bp related and felt horrible afterwards.

I hope your cyst goes away on its own and is nothing to worry about! They are very painful, I have had those too. I'll keep my fingers crossed for you. Hang in there!

I pray that changing his diet helps significantly! Let us know how he does, I will keep fingers crossed (and toes!).