Finally an answer but I hate it!

skn69Member

So I saw the cardiologist yesterday and he did all of the tests, reviewed my ultrasounds and x-rays from the last 2 yrs and went over my medical history with a fine toothed comb and finally came up with the answer to all of my problems.
I have D'Heller's-Danlos syndrom, which I have known about for 10+/- yrs...apparently it is at the heart of all of the problems.
He read the "real" medical description of the disease and even printed me a copy:
1. severe and debilitating fatigue
2. shortness of breath irregardless of the intensity or length of the effort (what??? Now they tell me!)
3. severe and debilitating nuro-muscular pain (!!!!!)
4. vascular fragility
5. heart valve weakness
6. severe difficulty in healing
7. skeletal deformations
etc.....
So, after hearing what my life has been and been informed that it will only get worse as time goes by and then being told that it is a 1/1000000 disease and that I am very rare...I was told that they can do nothing about it!!!!
He was very nice about the whole thing but I felt like I got whacked with a skillet in the face. I knew about the syndrome and that it prevented my suture lines from healing etc but had no idea about the rest. Was told that my heart needs surveying but it is doing just fine and dandy and my lungs are clean and happy...but I have some extra ribs that are compressing them a bit which prevents me from taking really deep breaths.
Other than that I have to stay on anti-inflamatories as long as possible and up the muscle relaxants.
That's it folks...been told that I need to 'adjust my mindset' and get used to it. OUCH.
I am to keep up the exercise and diet but no other advice except for a regular check up and would I like to speak at a conference on severe pain? I said yes.
So now I know.
Sharon

3/29/145:20 PM

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Jan DollarModerator, RN, retired

Sorry about all this Sharon. One thing that I have learned is that once you KNOW that there is nothing to do but the best you can, you don't have to waste time looking for cures and a restoration of what you thought was health. You just have to reset your idea of what is good enough and make the best of things. It actually is quite liberating. I pay attention to symptoms and once I have been given the OK to resume my routine, I do.

By the way, was there ever any consensus on whether you had some form of IBD, or was your bowel troubles also due to D'Heller's-Danlos syndrome?

Fingers crossed that you can tolerate the NSAIDs and muscle relaxants a very long time!

Jan

3/29/147:38 PM

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skn69Member

Thanks Jan,
Yes, it at least allows for resolution and somehow an end to useless hope...now it is just all about maintenance.
Yes, the IBD is definitely confirmed with strong suspicion of UC.
Now I think that I will order that stupid massage chair...if this is my life then I am going to have to adjust to it and do what I can to make it bearable.
Drats
Sharon

3/30/142:18 AM

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kkMember

So sorry your answer was not good. For me at least an answer would be better than spending so much time on finding anawers hitting a brick wall. At least for me I would know/need to then learn how to live w/issues like I did in beginning when first got J-pouch. one is just not eating/drinking much before going somewhere. now its different. I wish you the best in dealing all issues.

3/30/142:11 PM

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Rebe0505Member

sharon i could not say i any better than jan and i second everything she said..for me too there is a relief that comes with knowing what is ...and then moving on from there...its something i am always hoping to still achieve with my own bowel problems..

3/30/144:14 PM

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labloverMember

I am sorry. Hang in there..

3/31/146:15 AM

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skn69Member

thanks all,
Went to my niece's wedding last night and spent the evening sitting with the 'old foggies'...my 5 sister-in-laws who are all over 80...I finally got so fed up with acting old that I hit the dance floor....and it hit me back.
I could barely move...my hips felt like lead and my feet (wearing improbably high heels...I knowwww!)were killing me so I swayed to the music, clapped my hands and did my best to enjoy the youth and energy without hurting anything...Adapt or die I guess...I am adapting. Stiff as a board today and achy-cranky but at least I wasn't an old foggy.
ps...for those k pouchers out there...never try to empty your pouch in a stall while wearing a full length cream satin evening gown with a crinoline and 4 layers of tulle! If It hadn't been so frustrating and dangerous for the gown it would have been hilarious.

Sharon

3/31/149:48 AM

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rachelravenMember

I'm so sorry. I'm not in quite your boat, but it seems I must constantly be adjusting my life these days to feel well, and it's getting harder at times. So not to say that I know what you're going through, but I can empathize a little.

3/31/143:17 PM

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TE MarieMember

I am so very sorry that you too have something that there is no cure for. As suspected you always have had frail health. It was not your fault as you've fought it kicking and screaming your entire life. Good for you and your sheer will to keep on keeping on. Hopefully now you will be able to slow down some and give your body some more rest.

It took them long enough but you finally have a face to put on what is causing your problems.

This is such sad news. Another case of why do bad things happen to good people. So sorry my friend.

3/31/145:42 PM

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wsh6745Member

Sharon,
I am so sorry that you received the bad news on your condition. I don't really have anything to add other than to tell you that I hope you are able to manage your condition and find something that works to give you comfort. I'm glad you danced at the wedding and didn't give in to the temptation to hang out with the older crowd all night. Please let us know if there is anything we could do for you. I always see your posts helping other people so would like to be able to help you too if there is anything I can do. I wish you the best of luck managing your condition.

4/2/1411:35 AM

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skn69Member

Thanks all,
The pain and blockage are still there but the upped doses of anti-inflammatories are finally starting to help a bit along with those stupid muscle relaxants.
If I don't overdo the whole carrying-the-world-on-my-back and the computer too routine as well as spring cleaning and staying up late to write up finals I may just be ok...having problems giving myself permission to lay down and rest.
I have a 'U' kink in my gut that acts up too when I eat too much fiber so sometimes I am just not sure what hurts more. The guts or the spine...
Anyway, it is spring, I am buzzing like a bee and hoping for relief from the physio and meds...
pss...I hate oral iron! Giving me gas and black stools...yikes and yuck
Sharon

4/3/149:48 AM

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GinLynMember

Yuck. Yuck, yuck, yuck.

I am so sorry, Sharon. I know you will adapt, with grace as you always do, but I also know it stinks. Sorry.

Gin

4/3/141:05 PM

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Jan DollarModerator, RN, retired

Sharon, you and I must be kindred spirits! For much of my life, I ran around, full speed, multi tasking and doing it well. I am particular about how I want things done, and feel a little anxious when things are not in order. Even my many decades with UC did not hold me back.

But then came menopause and this damn inflammatory arthritis (and associated ills), and I'm a shadow of my former self. My thoughts are disorganized and without notes to myself, I'd be lost.

Even without a major arthritis flare, I'll have days where I am useless and exhausted. I'll give in and go lay down, and the next thing I know, the sun is setting! It is so frustrating when you can't keep doing what your mind tells you is necessary. It has taken me years to accept the transition, but it does not mean I'm giving up on a vigorous life.

Fortunately, my husband finally retired this week (at least from full time work), and I fully retired from my part-time job, so I can focus on myself, my family, and my home. I just could not do the merry-go-round anymore, and my husband also was weary of spending his energy on work.

Jan

4/3/142:02 PM

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skn69Member

Thanks Jan, you reassure me that I am not the only one,
Somehow I feel like many of us are over-achievers who have been lashed to the bed...I feel like there is a physiological leash that only lets me get just so far before it yanks me back to reality...I am fighting a lumbago that is threatening to block me and every time that I look at my garden I itch to get down on my hands and knees and dig! But then I feel my back start to block and my guts kick me and I lay down!
This slowing down business is driving me nuts...I want to dance til dawn and climb mountains and instead I am negotiating with the step ladder!
By the way I am still going to see if the surgeon can lift my pouch back up and hopefully that can offer me some relief.
Sharon

4/3/143:16 PM

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TE MarieMember

You are both right. I was on top of my game an over-achiever with a great self built business and happy family. Luckily my kids are grown and my husband is now retired but illness hasn't been kind on our marriage. I'm disabled because of multiple health problems, the business sold long ago. My depressed mind is not as quick and smart as it use to be along with my very broken body.

I'm thankful for your help Sharon and Jan the last 3+ years.

P.S. My husband is wiring our bathroom for a new Coco bidet he ordered a few days ago. We are doing fine.

4/4/1412:23 PM

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EricMember

Oh honey,

I'm so sorry, BUT, at least you know exactly what it is, and can treat it accordingly. In fact, you've seriously got me thinking, almost every symptom you described I have, but just assumed it was part of having so many surgeries in a short period of time (including my 2 rotator cuff decompressions, which refuse to heal, my next surgery will be my 7th major one in less then 5 years). I've had shortness of breath, but I'm a smoker, so I thought that was it, but I also have sever vascular weakness, chest pain and pressure, take forever to heal......I think, in a weird way, you're lucky, something so rare is seldom diagnosed, and thanks to you, I'm going to be tested for it, just in case, it certainly explain an aweful lot. The curse of having any autoimmune disease is it attacks all the body, so it can be so difficult to pinpoint one problem alone. I am truly sorry you're stuck with this, but thank god you know what it is, half the problem, at least for me, is the not knowing, feeling like I'm loosing my mind (too late!). I pray you get things under control, and as for it getting worse over time, I think that's a given for all of us, at least you know what to expect, so nows the time to arrange for that hunky blonde house boy to take care of you in your old age, I'll move in and we can share him!

4/4/1412:46 PM

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Mhg26Member

So sorry to hear about the bad news also Sharon!

I don't think I can say much that's different from what others have been saying, but I do wish the best for you as you tackle each new day. And I'm sure that's exactly what you do- tackle each day! Through it all you've been continuing to tackle the issues as they've come up, and I don't think I've ever read a truly negative post from you in spite of dealing with so many frustrating things. I remember being a noobie on this forum a few years ago and the amazing help I received from both you and many others here in regards to dealing with so many of the daily struggles with UC and the Jpouch. I'm hoping and praying that a great person like yourself can find peace and comfort as you move forward.

4/4/144:18 PM

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skn69Member

Now that's a thought! Never thought about the hunky blond houseboy but now that you mention it...yes, knowing is better than not knowing, even if you don't like the response...I am upping progressively the dosage of the anti-inflamatories but taking the omoprale to protect my guts...I think that it is a proton pump inhibitor so that is supposed to control the acid and thus stop the darned burning pain...will see how long I can stand it...for now I feel that it is helping...
It is the exhaustion that drives me totally bananas now...I plan my day around naps. I refuse outings in favour of naps and come running home (limping?) so as to hit the sofa and snooze...hubby has started calling me sleeping beauty...
How am I every going to finish that darn bucket list if I need to snooze all the time...starting to feel like an infant...bathroom, snooze, eat, bathroom....
We adjust to anything in life but the unknown is the worst so I am grateful for the diagnosis.
Hope you are keeping your head up and above water...have them check for D'Heller's-Danlos...the usual hints are a hyper-laxity of the ligaments and ligament surgeries qualify, capillary fragility, chest pain, shortness of breath, weeping exhaustion, great difficulty healing...yup..sounds about right. There is more but if your teeth and gums are starting to bother you too then you fit right in...
Hopes for a brighter future for the both of us...
Sharon

4/4/144:20 PM

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beckysmomMember

Sharon, so sorry to hear about this.
Hugs.

4/6/1410:44 AM

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Roni*Member

Sharon, so sorry to hear this. Prayers and hugs!
-Roni*

4/6/148:05 PM

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AllyKatMember

Sharon, I too am so sorry.

4/7/148:04 PM

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Very-UniqueMember

Hi Sharon, I just pm'd you but then read this post.
I have Elhers Danlos syndrome too, and I was only diagnosed last month.
I have type 3, which includes hypermobility, loose joints that pop out , easy bruising, and clicking joints.
I have the mitral heart murmur, and known about that since I was a teenager.
Back pain
Double-jointedness
Easily damaged, bruised, and stretchy skin
Easy scarring and poor wound healing
Flat feet
Increased joint mobility, joints popping, early arthritis
Joint dislocation
Joint pain

I am still trying to figure this thing out. I think my sister has it too.

I often wonder if this is why I have such problems with my W Pouch. My pouch according to the man that made it, is loose and floppy and I have a lot of problems emptying it.

Right now I am taking steroids and I can get around, but lately it has been very painful walking. Sleeping in a bed hurts, so I mostly sleep on the sofa so I cannot roll on my side.
I thought it was fibromyalgia for the longest time.
It is very hard to get answers for this stuff.
Veronique

7/29/142:48 AM

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skn69Member

Hi Veryunique,
Welcome to a very small and select club...that has free membership, you can never quit, you didn't ask to join and no one warned you that it was such a pain to be a part of!
Yes, I am pretty sure that quite a few people with pouches must have it too when I hear the list of all of the complications they have post op and throughout life...
I have all of the symptoms that you mentioned plus severe fragility of the veins which means I.V.s are a nightmare.
I honestly believe that my dad has it too...he is in hospital right now and they have to change his I.V. every 12 hours because his veins explode under the pressure...they have changed it over 20xs and I am hoping that they put a pic line into him because this is just rediculous...
I am combating, as best I can, some of the symptoms of this disease...like the loose joints and pain by using supplements...I take collagen, biotin, all B vits, a good chewable multi, copper, chrome, zinc (if they had a chewable multi mineral I would take it but I cannot find one) plus I drink a lot of high energy smoothies...
It helps a bit. I can feel the difference when I run out of collagen and the rest...my joints feel easier to move when on all this stuff but nothing will fix them permanently.
Beware of the extreme exhaustion...it is another beloved symptom and hits me like a ton of bricks when it comes.
As for pouch trouble...yes, as if we needed anymore problems...stretchy pouch, sutures letting go months laterr, things falling apart...all part of the perks of this club.
I didn't get your PM so please don't hesitate to send again...where are you?
I can give you a call if you need to talk.
So sorry that you had to join but it feels better to know that I am not alone.

Sharon

7/29/148:02 AM

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