Noreen

Thanks Julie and Summer-

Today's visit was with the rehab doc's NP for the wrist injury. Apparently I had forgotten that they had asked for permission to do a bone scan for further evaluation of RSD. No answer from the insurance carrier so something else to follow up with the attorney tomorrow. This afternoon's PT was not with the therapist I have been having luck with - the hypermobile one. My arm is numb and extremely painful. I have to grow an assertive backbone tomorrow when I see my usual one for the neck to tell her I can't tolerate the other one doing any therapy on my wrist/arm.

My son's med changes seem to be helpino. He followed the schedule today and went to school and then to his new therapist. I came up with a phrase the therapist loved and our goal is now to 'Avoid the Toxic Vortex' .

So all the positive vibes are definitely helping and believe me, I am grateful beyond words for the support.

Noreen

Bella-

Are you having luck with the Restasis? I have had silicone plugs for years and tried Restasis 6 yrs ago for four months or so. It didn't seem to do anything for me and I stopped it. Lately I have had to do a lot of the optic gel in addition to the usual preservative drops. I am seeing my neuro-opthalmologist next week and wondering whether I should mention it.

Your input is much appreciated.

Noreen

I apologize for quoting your post. I have hand fatigue issues and sometimes it is very difficult to use keyboard to delete prior post.

Your question made me remember my ancient medical history. When I was a teenager I was under the care of a neurologist for migraines. When I was 16, I had a period of at least 2 weeks where I felt like I was trying to walking on a boat and kept banging into walls. I couldn't go to school or drive during this time but I don't remember anything else being done. No fancy imaging equipment around then.

Over that summer, the doctor admitted me to the hospital for further testing of the headaches and eventually dx'd me with migraines and cluster headaches. The cluster headaches were not that bad for a long time generally surfacing primarily in the fall. When I was on low dose prednisone for years, I had no cluster headaches.

Geez... so aside from not persuing teaching for fear of standing, this thing really has been with me and shaped my whole life.

I have the same rash from the sun. I can't take the sun. I can't deal with heat.

Like some of you, I have a beautiful library tan as well.

My skin color makes me feel like Snow White (but I could also feel a pea under a lot of mattresses and there are days when I feel like I could sleep for a hundred years).

At least a lot of very nice stories have been written about us .... we are indeed royal ... supine pale women who are best off sleeping in the dark cold woods and who are bruised by the smallest insult ...

LOL...great post

I did not want to hijack the other Sjogren's so excuse my own.

Soph

Soph-

I hear ya where dealing with waiting for autoimmune dx is concerned. Years can turn into decades. . 6 tubes of blood every 6 to 8 weeks; 24 tubes every 3 to 4 months - it is just too much fun - and let's not talk about whether lab tests are accurate.

Getting the SLE confirmatory diagnosis is hard - the rheumy's are constrained by guidelines (I posted criteria in answering post under Sunlight). Sjogren's has enough symptoms and problems and is actually quite a serious condition.

All the rheumatological autoimmune diseases tend to blur in my opinion. I told my doctor years ago when I was flaring all the time and on high dose pred, that it seemed like my immune system was like a radio station that would pick up symptoms from surrounding stations (other autoimmune diseases) until it settled back down and focused on the RA.

Eye pain is excruciating. I'm sure you already use the gel at night and always have your drops to hand. Hugs and good wishes going out to you. let us know how your make out.

Noreen

Here's a link to Sjogren's NIAMS page fyi - http://www.niams.nih.gov/Health_Info/Sjogr...t.asp#diagnosed

So, I've been taking the D3 for 2 days now, and I feel like I'm sleeping on my feet. I keep feeling like my BP is really low, even when I'm laying down, but when I take it, it's only the usual low. I actually had to stay home from work today because of this! I feel awful if I get out of bed. This better go away quickly!

Hi Kitchmil-

Have your doc write you a script for the once a week loading dose of D then go to 1000 IU bid. My last results were again low despite taking 1000 IU so I opted for the once a week version - happens once a year to 18 months. for me it could be getting nausea and stomach issues or who know?

Our systems are delicate, remember.

hope you feel better soon,

Noreen

Thanks, guys. So far the inflammation is limited to my L5-S1 and is linked to my hip surgeries and the limping I did for 2 years. I see the acupuncurist today, and PT on May 4th. We'll see how things go!

Let us know how you make out with the acupuncture.

I'm with you as far as trying a period of prednisone is concerned. It makes sense. When you see the PT you can discuss her/his opinion regards TENS units we've discussed in the past.

One other little thing - I put off my spinal fusion surgery for 2 years by switching to Crocs after reading about them in Arthritis Today magazine. Just a thought.

Wishing you some pain relief soon-

Noreen

Chrissy-

Wow- what an experience. It is a good thing you don't ordinarily have panic attacks as that last night in the hospital could have easily brought one on for anyone. I felt every pot hole of your car ride home - you poor dear!

I'm glad you are on the mend. Positive vibes coming your way for continued healing!

Noreen

Don't know if this still helps, but I'm thinking of you. I'm sorry to hear about your son and about the anti-phosipilid syndrome. Hopefully your son is doing much better.

All the good vibes I can summon are headed your way. - Shim

Thanks Shim

Oh Reen,

So much on your plate! I hope they've started you on some sort of blood thinner, even aspirin. With your hypermobility, I wonder about some form of connective tissue disease, esp. with the new test results. One of my brothers (with dysautonomia) had his carotid artery dissect. He wasn't as lucky as you to have the prior tests as a warning. But, he is fine, great docs, etc. Our docs did test us for EDS, type IV as another brother had an aortic aneurysm. We don't have it, but I am certain that there is some connection... Your dehydrated state doesn't help with your thickened blood. Try to drink as much as you can. I hope you get more definitive answers soon. Your PT sounds great!

One thought about your son. Could he be exhibiting some symptoms of dysautonomia? I ask because my son appeared to be suffering from agoraphobia when he first became ill. He sense his BP was going to drop & adrenaline coursed though his body. Out of the blue, he was so anxious. He never wanted to leave the house. I know you know him the best. This could most certainly be his Aspberger's flaring, but I wonder...

You are both in my thoughts and prayers. I know your docs are getting to the heart of your issues. Better days are ahead.

Hugs-

Julie

Julie-

I am on baby aspirin and still on the plaquenil right now for the APS. I am considering going to Fletcher Allen in Vermont as they have a geneticist with experience with Marfan so regular EDS should be a piece of cake. I originally started looking at it following docs from the Autonomic society of America list so I am hoping if I can get my ducks in a row to go there and shoot them both. An interesting side note is that Fletcher Allen's instructions to referring neuro's say to obtain the test for copper, as in Wilson's. It is 3 hours away and Burlington won't have the noise and stress of NYC. Can't handle noise - when my husband got home with my son at lunch, he knocked down a magnetic rack on my refrigerator and I fell down due to the noise. I was dehydrated and had been up doing more since I had the house to myself but still - I just can't imagine travelling to Manhattan at this point.

I had the same concerns about my son but right now am unsure how to proceed. I actually did not know he was hypermobile until a couple months ago - lack of coordination is always a hallmark with Aspies and I could never get OT approved. They all want the train wreck not the warning when the light is coming down the tunnel. What makes it extremely difficult is he cannot identify his feelings as much as he think he can and sorting through what is what is challenging.

Oh well.. sufficient unto the day...

Thanks and hugs back at you,

Noreen

Yes, she does get the butterfly rash and rash on upper chest with just a few minutes in the sun. But she is not on Beta Blockers. Only Mestinon which is different than Beta Blockers.

The odd thing is that she NEVER got sunburned before her illness began 5 yrs ago and her skin tone was olive which became very dark in the summer with no sunburning. Since her illness she has extrremely pale skin (almost gray at times) and does not get sunburnt but does get the facial rash (butterfly fashion) and the chest rash and the severe autonomic symptoms with sun exposure. She also has difficulty withher eyes when in rooms with lots of artificial lighting.

That all sounds like porphyria or lupus, but again the test are negative for these.

She loves beauty pageants and even after a spray on tan at maximum strength, she still has the whitest skin of all the girls on stage. Doctors don't think that her skin tone is significant to her illness but it seems to me that the tie in should mean something.

Thanks for you input Summer. I appreciate any help since we all know the doctors can't take the time needed to delve into these issues.

Anyone else with sun exposure issues?

I have sun exposure issues - can't stand it at all the past 3 yrs. I get a raised rash over my chest and neck , burn with scarring. I have RA and assorted other autoimmune conditions and have been under a rheumatologist's care for 12 years. The problem with SLE is that you have to meet the blood tests as the rheumatologists are constrained by having to see the 4 out of 11 shown below.

"The American College of Rheumatology also uses a criteria list to help rheumatologists and other doctors make a diagnosis, but blood tests are the gold standard for confirming a lupus diagnosis.

Other criteria include:

Fever, fatigue, and weight loss

Arthritis involving multiple joints for several weeks

Butterfly-shaped rash over the cheeks

Raised red rashes that scar

Skin rash appearing in areas exposed to the sun

Mouth or nose ulcers

Joint pain with swelling and tenderness

Heart and lung lining inflammation (pericarditis and/ or pleuritis)

Seizures or other neurologic disorder

Kidney problems (blood or protein in the urine detected through urine tests)

Low blood counts (anemia, low white blood cells or low platelets)"

My labs never come out the way my doctor think they will after examining me. We have been dancing around this diagnosis for years - I think she had at least 4 last time I saw her but when her office called this week, the ANA was negative. The way we deal with this is she prescribes meds that will cover current conditions and probable/possible conditions. So, I am on plaquenil and methotrexate. The plaquenil is prescribed for the RA, the Anti-Phoslipid Syndrome, and is the go to drug for Lupus.

I actually was diagnosed with SLE by my dermatologist 7 or 8 years ago but I was healthy at the time so my PCP and the rheumy discounted her opinion. I would encourage you to have the girl seen by a dermatologist for evaluation and possible skin biopsy and she really should be under the care of a rheumatologist. If she ends up flaring, that would not be the time to try to find one.

Autonomic dysfunction and SLE seem to go hand in hand. Just google it if you need to have something to discuss as neurological involvement.

So I've been feeling a lot more human over the past year with the addition of Folic Acid, B12 and D. However lately I'm experiencing a lot more pain in my muscles (got a fibromyalgia diagnosis out of it) and more palpitations. All of this started after my last period (2 weeks ago). Went to the cardiologist for my 3 month followup and my heart rate is 130 laying down. Needless to say, he wasn't too pleased, so now I have a holter monitor and an echo. Grumble.

Need some support here. I thought I was mostly over the POTS crises, but they seem to keep coming - especially after stress. I need to hold out for 5 more weeks before I can give in to this disease again - if I can't hold out, I lose my job. Wish me luck!

Sara

Sara-

Wishing you luck that the right med combo helps you pronto!

Well, I went to Dr Zia today (neuro) and he tried to put me on Cymbalta for my mood swings .

..........

So all in all...I'm autonomic, autoimmune, rotting out, and have hypersensitive damaged nerves.

HOORAY. I think I'm going to go back to the final battle in my book now and kill some people. [cracks fingers]

Hey Poppet- Me, too. So we are AARHDN - it'll save a lot of writing on the medical forms.

Aren't the mood swings a little hard to gauge with the anti-b reactions and now the roids? Mood swings were par for the course for me when I was on high dose steroids. Cymbalta might help with nerve pain and it was originally marketed as a pain reliever drug - that is how it was originally prescribed for me. But, I tend to think you are right to wait a bit.

Hope you continue to feell better.

Noreen

Thanks Julie, Summer, Tearose, Thankful, Bella, Jana, Maxine, and Nina for the support. I truly, truly appreciate it.

The spine doctor and the psyiatrist are sending me to PT. fortunately, I have found a therapist who is hypermobile herself so she 'gets' it. I go 2 days a week for my neck and 2 days a week for my arm/wrist. I am using lidoderm patches on my neck in hopes of reducing overall med load. Everyone wants me back in 6 weeks which should bring me close to when I see the neuro who supposedly did autonomic work in his residency. so the three of them can work together. I see the neuro-opthalmologist next week and will have her send her reports along to them as well as to my rheumy.

The rheumy's office called and said I am now positive for anti-phosolipid syndrome. Add that to the occluded carotid artery and I feel like a walking time bomb for stroke. Nothing like having 97 dx's saying reduce stress. I got the new Dean Ornish book Spectrum - it is a good book and logical - I can't follow what my cardio says as it makes no sense to me. I have to dump him after disability issues have been resolved.

My son is being discharged tomorrow. Continued positive energy in that regard much appreciated. I finally found an exceptional therapist for Aspies but he missed the first group session Monday. Hopefully there will be progress in his being less rigid and less agoraphobic. I hold out no great hopes for a true therapeutic discharge plan - NY is horrible.

Maxine-

Praying for you, hon. It is so hard to have to bounce back and forth between all the specialists - I told the last one that if being treated like a superball would cure me I must be totally well. (the line was a little funnier in delivery)

Re: the bed. When I was a faciliator of my local chronic pain group, I would always ask about new beds - even Tempurpedic did not work for all chronic pain sufferers. Select Comfort had the best overall response- the only caveat with that is don't buy a full size with one air bladder. I got mine when I was 8 months pregnant and it made a world of difference. Now I am downstairs on an adjustable aerobed mattress with a 4 inch memory foam topper in an antique four poster bed and my husband has the Select Comfort. Adjusting firmness in the middle of the night is possible with either.

I'm a bit confused about the thoracic pain - is it in the spine from the ribs moving and with inflammation like costochronditis. Or is it in the spine like getting hit with a tiny mallet. Or both?

You are doing all you can - try not to dwell on it if at all possible. Let go and let God.

Take care,

Noreen

I think I'm trying to turn my weakness into a cool ride.

Problem right now is I'm not working so much.

I love the idea of renting one-that sounds great!

And I did wonder at big shopping places how I would do it but my kids could push the cart.

I'd just have to try it. I'd love to be a guinea pig and try it out for the group.

I could put a bit on youtube!

lieze

Speaking of youtube, check it out as some have adapted Segways for use with their manual wheelchairs.

I don't think you use a wheelchair at this time. For amusement parks, rent the electric riders they have and call in advance to determine what they have available for the handicapped. Don't go into detail about your condition and if it helps you to have a visual so people don't stare, buy a collapsible cane.

Hello My Friends~

For the last 3-4 months I have been dealing with new symptoms, including a greater degree of fatigue, and pain in my arms and legs. I'm wondering about CFS & Fibromyalgia. I've recently read that CFS/Fibro can be common with OI, which I have, along with NMH. New studies are showing (I'll get the study and post later) that there may be a protein called amyloid that can fold itself into a shape that's not healthy, which can reside in your brain stem causing CFS. You can get a spinal tap to check for these amyloid proteins which I'll be doing shortly.

My other big issue is that for the last three weeks, my BP is consistently lower than usual, and I've run out of options on how to bring it up. I can't tolerate Florinef, and Midodrine has done nothing to raise it. I already eat salt like crazy, drink lots of H2O and electrolyte drinks. My average readings have been like this:

Lying: 94/65 and HR 60 (always 60 - I have a pacer that won't let it fall below that)

Standing: From 62/50 and 115 to 69/58 and 89-125

I'm wondering if anyone else has tried something that has worked for them to get their BP up when it's really low. I can't drive, and can hardly make it around the house with this pressure. I am seeing my cardio in one week, but in the meantime, I'd really appreciate suggestions.....

Thanks!

Jana

jana

if your doc has tried the first line meds, would he be open to trying adderal as an aid for vascular componenet - can't think enough right now to explain mechanism; Anyhow I do 10 mg shortacting Adderal in the AM then start my Midodrine at noon. Since you can't do Midodrine, maybe you could try Adderal in 2 doses - this was how it was originally prescribed for me for fatigue but not how I took it. I just didn't know why I only wanted one 10 mg in the AM until this board.

just a thought to run by your doc,

noreen

OK. So who in the northeast is having an abnormally wonderful day today?

Since this thread died I thought about not thinking about barometric pressure for awhile, but yesterday I felt good and today... wow! It's almost like being half human again

I checked the barometer and... wow again! 30.59. I have never seen it go so high. Humidity is only 29% and it's a cool 56. And no one today told me to "have a nice day." I'm having one anyway. Harumph! I hope you are too.

Not I.

But if you are still looking for a cave in the northeast try Howes Cavern - http://www.howecaverns.com/live-in-the-cave

It is cool and barometric pressure is constant. I maintain it is the change in barometric pressure causing issues.

It is a lovely summer trip.

I thought that when I was seen at the Movement Disorders Clinic for the cervical dystonia, that they had ruled out Parkinon's and was okayed to begin botox with the physiatrist . In the meantime, I had a follow-up appointment with my spine doctor and one of my really bad spasms occurred. Hey - at least a doctor saw it so now it is real - you know how that goes. He ordered an MRI.

The physiatrist and the spinal surgeon rent space from my ortho surgeon. So I go into see the physiatrist's NP for an intake on the botox issue with the MRI - turns out the Movement disorders clinic hadn't yet released the office notes as they weren't signed and the MD was on vacation. The physiatrist and the spine surgeon come in - the spine surgeon says they didn't get everything on the MRI he wanted, the physiatrist says my presentation wasn't typical and he would not do the shots but would gladly send me back to the Movement Disorders Clinic. The spine surgeon sends me back for further views, the nurse practitioner has me come back at the end of the day. I end up with 3 Lidoderm patches a day.

So, the Movement Disorder Clinic calls and tells me the MD has signed the notes and they faxed them to me. It turns out PD is not totally ruled out and they are also looking at Wilson's Disease as a possibility. I'm beginning to think I belong in a House episode.

I go tomorrow to the spine doc to see what he wants to do about the bulging discs impinging on nerve roots at C5-6 and C6-7. The facet joint disease I can accept as part of the RA.

To top all of that off, my Aspberger son pushed me yesterday and I had to have him hospitalized.

So seriously, if you can spare the time, a good thought or two for strength would be much appreciated.

Noreen

Oh tilly, that sounds so painful! I was using crutches or a cane for 2 years because of a hip injury and I remember how I could NOT sleep comfortably in any position. I hope your flare eases soon.

It ends up that it's not my SI so much, as my L5-S1 joint. But I'm also having radiculopathy from areas of other lumbar, thoracic and cervical origin. I don't have EDS, but I've had these types of pains since my early 20's. I only have a couple areas of mild nerve impingement. I've been a passenger in car accidents twice, which have caused a lot of the pain. But during times of intense pain like this I wonder if there is validity to a suspicion of underlying collagen/connective tissue disorder (my dermatologist/GYN believe this to be the issue). I've been to a rheumy and been tested for everything but it's negative so far. I asked my orthopedist about EDS, and he says I don't have it. I'm just so tired of the pain.

I'm trying to just resign myself to being painful and trying to find ways to live with it.

thankful-

My right hip and L5-s1 were injured in a car accident in 1990. I wore a tens unit for almost 15 years which helped with the pain. I have hypermobility so it more than likely contributed, along with the initial injury, to my developing spondylisising spondyloslisthesis for which I had spinal fusion in 2008. I understand what you are going through and I totally sympathize. One of the therapies I found beneficial was water therapy in particular aqua jogging - where you wear a buoyancy belt.

Heck, two days after your last post my left SI joint dislocated and I said to myself "my goodness you are getting too involved if this happens by suggestion." But got that back, with residual soreness, my right hip went out the next day and today my left knee went - I must be going through a new connective tissue phase. BTW, I was diagnosed with Benign Joint Hypermobility Syndrome (the rheumatologist's version) in 1997. I mentioned Dr. Grubb and how he saw a connection with NCS and hypermobility and I actually think she might look it up. (I will bring her an article anyhow.)

Pain is a valid symptom/disease in its own right and you deserve to be treated for it. While doing everything you can to reduce and/or minimize it, there is nothing wrong with judicial use of narcotics when needed.

All the best,

Noreen

Angela-

No experience with that med. I just wanted to say I'm glad you got the walker - remember they are mobility aids - it allows you to get out of the house and avoid deconditioning. You've already noticed it has removed your cloak of invisibility but it will help you in many ways.

Your hubby just wants to be able to take care of you and, to him, the walker is kind of a symbol that he cannot do that. As he adjusts, he'll come to realize it is there to keep you safe and give him peace of mind if he has to turn away from you for 30 seconds.

Hope somethings helps but in the meantime, it is great to keep those concussions to a minimum.

Noreen

May the Lord guide your surgeon's hand and may healing energy ensure a speedy recovery.

bella-

{{prayers for your therapist, hugs for you, and healing energy for you both}}

Noreen

One thing to think about-------------------- Things aren't always what they appear to be.

Negative words you hear from other people, no matter who they are, may have no validity behind them at all. Keep this in mind-----just because someone has a "title", it doesn't mean they know what their talking about.

Maxine :0)

You got that right, Maxine. Oftentimes, the things we regret the most are those where we didn't listen to our gut feelings/instinct.

One of the most valuable things about this forum is that it validates our instincts that something is not right and helps us gather the courage to deal with those with 'titles' .

Interesting that we are right back to the answer of the question - both.