Pain Is Getting Extreme

[Maxine]

My pain is so bad tonight that I feel on the verge of collapse. My spine is on fire----especially right in the middle just before the curve----it's horrible. I'm on ICE right now. A friend of mine from NY told me about ultram-(spelling?) for her EDS pain, and said it also helps with her OI symptoms. When my body settles down a bit, I was thinking of trying it. I need to do something.

Tonight we went to Meijer-----50% off things that were already 50% off---we went for my grandaughter, my husband did all the work---putting her in and out of the car seat, cart ect. All I had to do was walk from the handicapped parking spot to the door, and tool around the store a bit. I could only hang in the childrens clothing dept., as my spine pain, and shoulder pain was sucking the juice out of me. By the time we went to pay for the clothes I was a train wreck. My husband went to gently rub my back and I snapped at him to not touch me. No one can touch me at this pint because I feel like a jittery mess, and my body is buzzing from the torso down.

I wish I could turn back time---and I would have never snaked myself around my car seat to grab Kaela's sippy cup that day. I didn't think-----I just wanted to make sure she had her cup----she's at the 2 1/2 year old meltdown stage, and with my POTS we try to avoid those---- Loud noises shrill through my body----amkes my POTS go crazy-----------it's also know that people with chiari related conditions have this thing where noises sound louder---I can't remember what they call it......

All I know is that something is sticking out in the middle of my back now---and the pain is mind numbing---and it wraps around to my chest----screwing with my heat making me worry if it's chest pain---or my back pain again. I only made it though half the cardiac CT scan yesterday----once again, they couldn't get my heart rate down. We doubled my beta blocker, doubled the klonopin, and added valium----my hear rate went from the 90s to 106---it just went up. They even gave me an IV bolus bag------but i'm wondering if they infused me to rapidly, as that is when my HR jump up more. My BP was high for me-----138/88----very high for me.

It runs very low normally----but when I get overstimulated by going out---especially the hospital, my BP runs high. Basically this a POTS crash for me-----I'm more symptomatic when my BP is high. When it's low I get very sluggish and wiped out, but when it's high, my wiped out feeling is worse, becaue I'm also very over stimulated at the same time. My near syncope happens when I'm thinking I'm doing OK---and suddenly find out I'm not. Basically this is when i'm trying to walk with very low BP, and all of a sudden my balance is off, and the floor is moving. I get so overstimulated----that I would rather deal with low BP. I can work my way around that. And if I can't get around, at least I don't lay on the couch with my body buzzing all over the place.

I have had good treatment from my neurosurgeons from out of state in NY, and Wisconsin, and the EDS specialist in Cincinnati. Since I've been stalked by the nurse, a couple of the nurses don't treat me the same, and I'm not even sure that my health issues are taken all that seriously. I'm a sand bagger usually, and half the time I don't even express how bad it really is to some people, so when I do express the full extent of my pain, and symptoms to a medical office I want to be taken seriously. I just hate going through my list of symptoms and problems---it just takes a lot of energy.

I have made an appointment with Dr. Chelimski in Cleveland. I need to see an ANS specialist who is also a neurologist. I do have a local neurologist, and she is trying to help, so I feel gald for that. She is the one who is looking after those lesions in my brain----especially the one on my brain stem area. I'm really not going to go into a whole lot of my other health issues with Chelimski---unless he asks. I want an autonomic workup----. I want to find out why my heart rate isn't compensating when my blood pressure drops to 70s over something, but yet it will spike up over 100 bpm just sitting ----or even in my sleep, and this is on 60mgs of my beta blocker propranolol.

Then this morning I wake up with bruised shoulders---especially the left-----sore to the touch. Then i'm trying to remember when I hit my shoulder on something. Then I feel my right one, and it feels bruised, but not as bad. The only thing I can think of is that I had to put my hands over my head for the CT calcium scoring. Now how in the world can they get that sore from this-----maybe the EDS? They were pretty hyper mobile when I had to move them back. I don't know.............

It seems like the EDS has affected me more quickly in the last hear and a half or so, so that's why I wanted to see a specialist. He told me i'm aging, and that I'm not going nuts, and that I will have more problems, and it may seem like it's all at one. SEEM? It is all at once...........

Sorry folks---just venting mostly-----and really depressed---(profoundly) since the incident with the verbally abusive nurse who stalked me on this forum----especially since I had the courage to step up to the plate and place a formal complaint, and now I'm being punished for it. I can't shake the anxiety when I go for any kind of medical treatments of procedures since all this has happened.

I feel a little hopeless---and I just needed to vent. I'm truly sorry I have not been on here offering more support-----------I'm just so wiped out. This is long----so I'm going. I have my lap top propped up on a pillow, and it's still painful to type. Then I make mistakes, and get so frustrated I want to throw something----I not amking any corrections tonight---so I hope you are able to understand ........

A very Sad Maxine--------------I should snap out of it---just having a bad night-------

[Sophia3]

I am sorry you are in such pain..i would urge you to try any pain med to see how you adapt. then see a therapist for your severe frustration and emotional pain. It's tough when we feel betrayed by the medical profession and I am sorry your situation is worsening.

Try the ultram...or something stronger. I got oxycodene after my surgery and it really helped. Instead of taking one or if needed two pills, I found half of one helped great and didn't make me so woozy. It's a flat pill easily scored. It's addicting like everything ELSE out there but can give relief in a crisis or for short term.

Good luck.

[mkoven]

I'm really sorry about all you are struggling with. As an edser whose symptoms hit me all at once and seem to come in waves (tidal!), I can understand.

Not that I in any way have this under control, but I find I have to be the advocate for myself-- which is hard when I feel like ****. For my pain, I try to research what braces will help when I'm really flared up, and then get my doc to prescribe them. I also try to find out which muscles are in spasm that can pull joints out. (ALong the way, I've learned more about anatomy than I ever wanted to!). I've had a lot of luck calming down pain with trigger point release--either done by a pt, mt, and once I know where the problem is, myself.

And as you suggested, sometimes you need a really good painkiller, and a doc who will prescribe one. I've developed allergies to so many, but till recently vicodin did the trick.

Several years ago, before my diagnosis, I went to a chronic pain management program for a month (insurance paid). (Out patient, but whole day). Though it didn't fix me (as many more injuries were to come), I did learn useful tips for dealing that I still use. These programs are a mixed bag, with little uniformity. I went to the one associated with the Rehabilitation Institute of Chicago--helpful and well rated. They focus as much on the physical part of the pain (with pt, ot, meds, etc.) and with ways to manage it, as they have psychologists there who specialize in chronic pain.

[Patricia Gallup]

Yes it is amazing what Pain Management, Physical Therapy, exercise, medication, the power of positive thinking, and good counseling to deal with anger issues, can do for bodies like ours--IF you actually DO the things doctors advise you to do, long term.

Myself and my daughters Joint Hypermobility would not be under control if not for exercise, and out of 13 PT's between us through the years and injuries, we've only met one PT who was not aware of EDS. And my daughter has a Pain Management Specialist who manages her severe pain, and keeps her functioning quite well even working to find two medications that work through her severe medication intolerances to allow her to be pain free, even while exercising.

Also I think it's important for EVERYONE to remember this is a public forum available to anyone for reading. Whatever you post here is available on searches such as google by user name or topic. While it is sad that people who don't have dysautonomia choose to join, and trolls exist, anyone can read ANYTHING you write here. This INCLUDES doctors, nurses, people who work for social security, and family members.

Good Luck in finding the help you need, and following through with that help.

"Can't lives on won't street."

[Maxine]

Thanks for your support Sophia and Mkoven---

The Ice helped me last night and made the spine pain settle down a little. It's still there everyday, but the intense pain has calmed. I usually get this in spurts, but last night it lasted, and it took my breath away. My shoulders are feeling better too. I slept 10 hours which also helped.

If I could just find a doctor locally who is familiar with all of my issues that would be nice. As far as PT. I am warned to be extremely careful due to my cervical spine/cranial instability which puts pressure on my brain stem from the c-2/odontoid bone flexing forward along with the prominant vertebral artery, and the chiari-0/small posterior fossa---and other spine instability. The EDS specialist said only PT in a pool, and only with a kick board. I may not use my upper body in any form of PT other then using 2 pound weight to try and keep my arms toned.

This is why I'm doing the cardio testing so I can feel comfortable working out in a pool.

YES-----ANYONE CAN STALK US, this I know, as this is a PUBLIC forum. BUT, it is NOT ethical for a nurse to tell you she has been reading your posts---and then verbally abuse you on the phone because of her own personal opinion that she feels I can work full time based on 1.4 posts on average a day--------(claiming I sit there posting all day long on the computer). This is so insane, and what kind of nurse is this who spends her time doing things like this-------how is this affecting her work performance?

If I choose to have surgery to correct the upper spine instability--(hopefully I will have a choice in this), then it will only help things from worsening neurologically. I may get lucky and have some improvement, but it is likely that the pain issues will be helped, and that may be it. The EDS has targeted my spine a great deal, and the other areas of my body are being affected more as time goes along.

Since my EDS has affected my vascular system this helps explain my OI, and why it's getting worse.

It makes a big difference if your Docs take you seriously----and locally I only have one of those, and his time with me is limited due to a huge patient load, so I only ask him to address my POTS issues, and he is doing the best he can. Correction---I do have a new neurologist who seems to take this stuff seriously, ans she is watching those brain lesions closely.

I'm also on a waiting list for the EDS study at NIH, and will be seeing the neurosurgeons this spring to discuss my spine instability. I do have a brace for my cervical and thoracic spine, and this helps relieve the pain somewhat, but you can only sit in a straight chair or stand with this on because it will ride up my body and push up on my neck in any other position----that is why a lot of people with this type of spine instability hate those cervico/thoracic vests. I also use ICE----but my pain levels are getting too high and I'll need pain meds. Hopefully this won't shut down my bowels any more then they already are.

So one needs to have an open MIND---and not judge a person saying that they are not trying to help themselves in so many words. No one knows better then my therapist on how hard I work to get the help I need! "Can't lives on won't street"? what is this? And as far as positive thinking goes-----good support goes a long way to help that along, but I still try even if the support isn't there.............

It amazing the ignorance out there---isn't it................hmmmmmmmmmm

I think I'll find a piece of dark chocolate to perk me up a bit, so I can get that "positive thinking" rolling.

Right now I'm doing everything I can to help myself---despite the ignorant nimrods who try to put a monkey wrench into the mix trying to mess that up for me. My depression is being treated also, and I don't think it would be half as bad right now if I had not been through this crazy stalking incident.

Maxine

[dizzygirl]

Maxine Hi so very sorry that your pain is flared so bad..

Um I was on Ultram..(and as you know meds react differently to everyone).. But i found little or no relief from the medication.. but everyone is different.. my dad took the same med and it really helped him with pain...

Maxine.. you might want to look into water theraphy.. you have good insurance so im most certain that you insurance will pay for it.. but water therapy might be good for you.. Im going to try to it for pain management.. i figured at this point it cant hurt you know..

thats for a longer term thing.. a good PT is key for you I agree.. but with all you have going on i also agree to be picky and careful as you dont want an inexperienced one...

would your neuro locally or the guys from tci be willing to write you a script for a stronger pain bed.. for when you get flares like this?.. have you ever tried torodol? I ve found that if i take torodol .. if i catch the pain in its early stages.. i know sometimes it hits you full blast.. but if you catch the pain ewearly i know that i have sometimes had success with torodol.. only if given thru an IV.. it works much better that way..

oh and as far as depression goes.. geesh im sure all of us on here have been affected by depression to some degree or another.. how could you not living with the limitation of POTS ALONE.. Not to mention everything else you have going on.. not to mention that until recently docs havent been taking you seriously!! What the heck!...at least your not in denial that your depressed... thats a step in the right direction..

seriously though please get some thing to help you when you pain is in high gear k..

feel bettter

big gentle hugs

diizzaloo

[Maxine]

Thanks Dizz!-----

Yes---I do need to be very picky with a PT. I have had PT in 2002 before i was diagnoed with the instability and EDS. The PT was to help me learn better body mechanics, and tone my legs after my cerviccal spine surgery.

I think I will most likely talk with TCI Docs about the pain issues----they can recommend that my local doc write a prescription. Since they are so familiar with EDS, and are involved in the EDS study at NIH they will have a good Idea of what the combination of EDS and spine instability is doing to me. I know I have dislocated my right shoulder blade a couple of times, but I did not realize how bad this can get. Just putting my hands over my head on the CT Bed caused so much pain in my shoulders---i was quite surprised. I think that combined with my spine pain put me over the edge last nigh.

I will be making more appointments with my therapist---(every two weeks) to help me move on from this incident with those nurses. There is only one other thing that made me feel betrayed the same way------it's how my employer handled my illness, and a close friend of mine that I HIRED turned her back on me. I worked there 10 years, and when I got sick their only concern was that I might sue them after it was found I had lead poisoning------------they quickly got rid of me. A lot of fumes came in through the vent in the front office, and a lot of the girls complained who worked there. But I had been there the longest---so maybe more exposure------who knows--------

I made them sign a lay off slip so I could collect unemployment, as it was not determined I could not work until late 2003, and this was April 2001. I was still so sick, but nothing was officially diagnosed yet, other the then lead poisoning, and then blood work later showed normal............but then again the blood life is only 35 days............hmmmmmmmmmm.

Thanks again dizz...............

Maxine :0)

[pat57]

I'm sorry your feeling so badly Maxine

[dizzygirl]

Oh yea i wanted tomention about pool theraphy..(my sp is way of today sorry!) But my point.. Um a few years ago i did pool theraphy.. it helped me.. and i tolerate it much better.. then regular exercise.. normal land exercise i really have an extremely hard time doing....too potsy..

Start slowly with water therapy.. even though you might feel that you "can do" a little longer.. start out with set time incriments and work your way up.. i found that in the pool i was "OK".. but getting out.. with in minutes i was so tired!

also.. if you can find a PT who will hop in the pool with you and do one on one.. that is ideal...it will just take a bit of searching.. I hope it will help you..I never swam in the pool but i did exercises.. with floaty things... and i used a step thingy to.. that i liked...

hang in there girly...and call tci.. mayb they can give you something till you can get into see them..

hugs

[Maxine]

Thanks PAT57, and Dizz.

I will definately start pool therapy soon. I have to find a pool that I can handle, as many of the PT pools are too hot, and make me sick. In the meantime, I really can't do anything that is not in pool.

I'll probably have to go with the YMCA pool. However, I would sure like to have the guidence of a PT to help me with body mechanics. It's going to be pretty basic though, so maybe I can handle it without. I'll be using a kick board, as I can only exercise my lower half due to the cervical/cranial instability.

Today I called one of the moderators of the WACMA site---(world arnold chiari malformation association) to discuss the worsening of the EDS issues, and she recommended that I call Dr. McDonnell to see if I can be moved up for the study, or perhaps see Dr. Francomano who also works in Genetics at NIH----but I'm not sure about her, as she may have relocated.

I also contacted TCI, and I'll see when I can set up my appointment with Dr. Bolognese and Dr. Kula.

This is all so overwhelming.

Maxine :0)

[mkoven]

How about just walking in the water?

BTW, I'll be seeing Dr. Francomano in March. I've heard great things about her. She's in Baltimore.

Best,

Michele

[Guest tearose]

I wonder if you could use a "wet suit" in the PT pool?

Would it keep you from getting too hot?

tearose

[Maxine]

Thank you michele and tearose----------

I'll talk to the PT, or ask my local doc if she knows of a place with a pool that isn't too hot, or if there is some kind of wet suit to help my body not feel the heat--- I'll will have my PCP write a prescription for PT as soon as my heart testing is done.

Michele, I did do walking in the pool and I liked it, but the water was too warm, and it affected my POTS. when I can find a pool that agrees with me I will be doing that again also. I forgot about that---------walking in the water would help also, and be a nice work out.

Once when I was walking in a pool where the water was all the way up to my neck, it was great. However, no one warned me when I get out of the water what would happen. I imagine they didn't have a clue about our gravity issues that come with OI/POTS-----that why it's important for the medical community to be educated on this, so things like this don't happen. It was horrible---------------my body felt like it weighed over 1000 pounds. My heart flipped out, and I started to grey out. I didn't know about my EDS, and I imagine since I have vascular involvement with blood pooling, my blood must have dumped--------

Dr. Bolognese from TCI--(the chiari institute) sent me an e-mail with the results of my latest MRI. Things are the same other then new lesions forming, and a flattened pituitary gland which can cause another set of problems.

I talked with the NP from Dr. Bolognese's office about setting up an appointment for spring. She said to e-mail Dr. Bolognese to see if the EDS specialist will be there also----so I can see both docs in the same trip.

I still have to schedule the colonoscopy whihc the whole family has to have since my brother was diagnosed with colon cancer last year. And I also have to get fitted for a c-pap machine at a sleep study after it was determined I have obstructive sleep apnea-probably due to the brain stem compression.

This doesn't sound real does it----------------

Maxine :0)

[bttrflyamby1981]

I'm sorry your in so much pain!

Sorry I can't do anything to help.

((HUGS))