Pain Has Become Main Symptom Lately.

[Maiysa]

Hi Everyone,

Unfortunately the autonomic neuropathy was worsened by my thyroid numbers being extremely hypo. But now that my thyroid meds have been increased my body is still aching terribly. It's putting me out of commission. My joints are NOT swollen, but they hurt, almost like a tendon or something in inflammed. Mostly at my groin and shoulders and I'm full of bruises, about 12 right now just from a lil walk. And my neck is in very bad shape as well as my spine has become more stiff than usual. I've been doing light yoga, and it has helped so much, but I've noticed the pain in my joints is slightly worse. I thought maybe this was all thyroid related, but just thought my muscles and pain should be lightening up after new thyroid meds. Sooooooooooo frustrated. I've also noticed that my eyes are slightly swollen and sunk in. Wish I knew what the cause is. Mayo said the above diagnosis is only part of it. There is a missing link somewhere and they have tested me for most everything they can think of. Nothing shows, except my tryptase levels are elevated to 11, which another doctor is working on a mast cell diagnosis. But have another month to wait. I also posted on that site to see if pain is a possibility. I'm hoping they come up with the fact that I'm not eating enough chocolate donuts!!!!! Anyone else have this pain... If so I'm sorry for you. Thanks for listening!

[bellgirl]

Maiysa, I'm so sorry that you are feeling badly We all have those days, and I know it can be frustrating. I had some neuritis on my right side for about 5 years, that made it hard to sleep at night after a virus I had 14 years ago, when I first started having symptoms. It finally went away, but I have to admit that just two nights ago, I was achy all over, like a flu, that kept me awake most of the night, but I didn't have a fever, and I did somewhat better yesterday, than this morning I woke up so stiff, I could hardly move, finally worked out the stiffness, and then ended up with stomach pain; but I have finally decided that this illness is just unpredictable!! I have always had a lot of neuro related symptoms from the start, a lot of Multiple Sclerosis- like symptoms for as long as I've been sick. I've never had thyroid issues, though, and never been tested for MCAD, but I do have allergies and asthma, too. Have you been tested for any autoimmune related illnesses? All that bruising concerns me; Did you run into anything? I would definitely let your doctor know about that...Have you had a CBC lately with your blood work? I would ask the doctor to get a platelet count, if I were you. Let us know how you are doing...I'll say a prayer for you, too! I hope you have a better night...

[Maiysa]

Thanks Kim. But am sorry you have to deal with this too. Hope you're feeling better. I feel like I have the flu a lot and can get fevers sometimes of about 101 for days. I notice it's usually around my period. Who knows what that is. I thought the bruising was from the anemia and assumed it's been the cause for a few years now. But they said the anemia is only slightly low right now. But even if I stretch, the area I stretched at will bruise within a few hours. The other day I walked a little bruises formed around my ankles within an hour. Or even if I sit in a chair, there will be a line of bruises where the chair hit the back of my thigh. Bizarre. I just had extensive blood work at the hematologist the other day and they took 11 viles of blood and told me they tested me for everything. What did come up abnormal was my tryptase and a slightly high CH50. Doctor said it just proves a lot of inflammation, and also slight anemia. But doc said it all looked pretty good. And he works at the cancer center. So I'm pretty clear there and ANA was normal. Thank God. It really does feel like something in my tendons or in that area is always inflamed. But will ask for an xray, that's a good idea. Thank you!

[ddschool]

I can sympathize. I was functioning ok w/ my dysautonomia until last Sept when I started having severe chest pain & low grade fevers. I feel like any "normal" function that I had was gone, & my fatigue was worse. Recently, I found out that I Coxsackie B virus & Echovirus.

[issie]

Do you have EDs? We all bruise easily. I say - you can just look at me hard and you'll bruise me. LOL Not funny to have bruises all the time. Also, can cause all the pain you're speaking of. Most of us get osteoarthritis at a very young age. Could be some MCAS associated with it too - especially with the high tryptase levels. Have you started trying an H1 and H2. That is the first thing they will do to see what happens. Most of us use it a couple times a day. I try to just use an H1 and if I have to an H2 later if that doesn't work. My Mayo doc told me to do it this way. Also, said to always use an H1 with the H2 and never take an H2 without an H1 because the H2 will convert to an H1 and make things worse.

Hope you get it figured out - I know how horrible the pain is and the miserable way you feel if there is both EDS and MCAS along with POTS - ugh - what things we deal with! Feel better!

Issie

[Maiysa]

HI Issie, I had never heard of this until you mentioned EDS on another reply a few weeks back. Is there a test to take for it. Does your neck hurt? I also notice today that something is swollen on my butt bone, like a tendon or something now. Ugh... I think I told you that they are still working on the MCAS diagnosis. And for some reason a test called CH50 came up elevated, so just a lot of inflammation doc said. Thank you so much for all that information about not taking an H2 without H1. I can't remember which is which. I'm still working with children's doses since it's still making me feel very strange but have worked up to a half a children's claritin dose once a day. But I notice if I take the children's zantac alone I get so dizzy that I have to lay down. I actually quit taking it for a while as it was making me sick. So I assume this is the H2....I will have to look it up. The doctors haven't told me anything yet on what to do for mast cell, they said I definitely have an elevated amount. I'm just taking claritin for severe allergies and zantac for stomach issues. But this is good information. Thanks Issie.

Sorry photographer to hear of your issues. I have not heard of those virus's. Will have to check it out. Fatigue is also knocking me down lately. I feel for you.

[issie]

EDS is Ehlers Danlos and is a connective tissue disorder. There are different forms of it and all but the EDS III variety can be tested with genetics. It would just give you another piece of your puzzle. You can look it up on line and there are flexibility test that you can see if you can do and maybe determine if it could possibly be a part of your picture. Yes, there is a lot of pain with it.

With the high tryptase levels I'm surprised they haven't officially given you at least MCAS label - most of us don't catch our levels high and we never get an official diagnosis because it has to be caught within an hour of a flare or it comes back normal on us. Also, the methyhistamine 24 hour test will usually show high too - if in a flare. I'm sure that's why they have you doing the H1's and H2's. There is also Nasal Crom that some use. I was recently told that a high NE (noriepi) level was indicative of MCAS - and I do have that recorded.

Hope you feel better and get some of it sorted and figured out.

Issie

[Maiysa]

Thanks Issie. I will ask doc for a test. I don't have the hyper joint situation. Do you have this? But it sounds painful, so sorry for you. I'm only double jointed in my elbows, but other than that nothing with my skin or other joints. Mast Cell- I've never had a the 24 hour methyhistamine test and the hematologist saw that my numbers were high for tryptase and I took the test twice and it came out 11.6 and 11 and he said don't worry about it. It's just a lot of inflammation and told me that I would not need to be treated for MCAS after he told me he was sure I had it. So I'm really confused. I took the test both times and I was not in a flare up so waiting for a big flare up and flushing to get another test. Yeah, I'm not so sure he is up and up on the MCAS issue, but is sending me to another doctor to look at it. They never put me on the H1's or H2's, that medicine is just from my family doc that has no idea about MCAS. So I'm taking those meds for other issues. Haha. I'm sooooooooooo confused as my doctors basically have me on a yo yo string. I go May 5th to doc who deals with MCAS and hopefully he will be able to help, if not the doctor on the East Coast, Dr. Castells???? said they would take me as a patient since my levels are so high. Do you know anything about the CH50 test? My doc said that showed a lot of inflammation. But just said see you in a few months. Wow. Nevada is a tough place to find a good doctor. But I keep trying. Night night Issie!!

[issie]

I don't know anything about the other test. I'd try my best to get to someone who knows about it with that high level - cause it could indicate other things as well. Things I hope you don't have. I'm sure you've researched it??????? If you can go to the specialist and your insurance will do it - go for it.

With the double jointed elbows - maybe wouldn't completely rule out the EDS III variety.

Keep us posted.

Issie

[Guest Alex]

Maiysa,

sorry to hear you have to deal with pains as well. I wish I had a magic wand to have them go away once and for good. My most terrible ones are my chest pains. Every time I get them (and I get them daily) I can't help but wonder if I should call 911 or what.

Before the POTS diagnosis I used to have some terrible pains in my arms and legs (couldn't tell if muscles, joints or what). I used to wake up in the middle of the night crying in pain. Ever since I got my vit D level back to normal (mine was 20 some, and the norm is somewhere between 80 and 100 according to my lab papers) the arms and legs are behaving. The chest is a totally different issue.

Again, I'm sorry you're going through this. I hope you'll find something to help.

Hugs,

Alex

[Maiysa]

So sorry Alex that you have pain. Pain in the chest can be very scary. That is interesting about the vitamin D levels. I think mine was also at 20, but doc said it was only slightly low. But am not sure what reference range he was using. I tried to take the vitamin D but it made me feel strange, so will slowly work into it. Are you able to take the vitamin D? Thanks for the support. And hugs to you too

Maiysa

[Guest Alex]

Hi Maiysa,

I've been taking 5000 IU vit D3 a day for 3 months, ow I'm down to 2000 IU a day. (I went from a level of 20 to almost 90, some sunshine might have helped as well ).

I tolerated the supplements OK, but I'd suggest you talk to your dr before deciding on a daily dose. Like you said it might help to start gradually. Also I heard there are different varieties of D3 on the market, and some people might be more sensitive to certain brands. I take Nature Bounty.

I hope this helps.

Alex

[Maiysa]

Thank you Alex, I got a chewable Vitamin D and am working my way up to a larger dose but am moving very slowly up to just 1000 IU. You are so right as I have heard it does help muscles. Thanks for your reply.

[Guest Alex]

Maiysa,

I'm glad to hear that.

I hope things will get better for you.

Have a nice weekend.

Alex

[bellgirl]

Maiysa, I also was diagnosed with low Vitamin D, and I was put on 4,000 I.U.'s for a month, and then a maintenance of 2,000 I.U.'s. Check with you doctor. It is giving me more energy. In order to get the full benefit from the sun, 40% of your body needs to be exposed!. I'm also drinking more milk, eating cold water fish...Make sure you get D3 for supplementation. Levels of 40-70 are optimum. Mine was only 25. Hope this helps! Achy muscles can be a symptom of deficiency!

[issie]

Just a note - many are finding dairy is a major trigger for allergic reactions, irritable bowel, asthma and even pain. If there are autoimmune issues - one of the main things suggested to come off of is dairy. That is one of the things that MS patients are told to avoid. Don't know if this is a cause - but, could be a possiblity. Other dietary contribuitors are Glutten and sugar.

Issie

[martiz]

I try to just use an H1 and if I have to an H2 later if that doesn't work. My Mayo doc told me to do it this way. Also, said to always use an H1 with the H2 and never take an H2 without an H1 because the H2 will convert to an H1 and make things worse.

Issie

This was very helpful, Issie. I did not know that is the best way to take H1 and H2. I do both but not together so I am doing it wrong.

Thanks for this info. I also didn't know that EDS'ers bruise easily. Explains alot!

Marti

[martiz]

So sorry Alex that you have pain. Pain in the chest can be very scary. That is interesting about the vitamin D levels. I think mine was also at 20, but doc said it was only slightly low. But am not sure what reference range he was using. I tried to take the vitamin D but it made me feel strange, so will slowly work into it. Are you able to take the vitamin D? Thanks for the support. And hugs to you too

Maiysa

I was not able to take regular Vit D supplements - I had to work my way up. I was also very low - 23 at one point. There are vitamin D drops so you can start at very low levels. I would get very sick taking even 1000 units. So I would take 1000 units every third day. I am now at 1000units of Vit D3 every day and will start the every third day for the 2nd 1000units. I am supposed to be taking 4,000 to 5,000 daily. I have a ways to go!

I take Low dose naltrexone for my pain. Works as long as I don't overdo it. I order it from overseas and make my own titration. I take 4.5 per day.

Works for joint, muscle, and that all over pain.

Marti

[ramakentesh]

MCA episodes are associated with profound hypotension, fainting in nearly all cases.