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Rgaff

Does Anyone here with POTS also have RSD/CRPS ?

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I am brand new here. Today is my 1st day after some time of looking around the web. Never thought I'd be online looking for a support group until I admitted I need support. I was an avid and active athlete until I broke my ankle in 2008. Tennis, skiing, you name it.  In 2009 I was diagnosed with RSD (Regional Sympathetic Dystrophy). In July of last year, 2015 I was diagnosed with POTS. I am a 46 year old female and I simply feel like my body is a crock. I am so utterly sick of dealing with it alone. when trying to explain, people just dont get it. Why should they? I barely do !  Last year I had a skin cancer removed from my nose. Skin graft failed. Then had skin flap with massive reaction. I react to most medications. I dont seem to recover from routine surgeries, including my shoulder one, which 1 year layer doc said I had zero healing from 1st surgery due to no blood flow for healing ( I told them I was in pain all along) 

Now, since April this year, I thought maybe I had now joined the ranks of gluten intolerance. it seems as though there isnt any real pattern to what I'm eating, it just seems to be food. I look about 8 months pregnant when I eat.  My knuckles on my fingers hurt every morning. My joints hurt.  I am headed to the Cleveland Clinic in November for 3 days of testing. I feel like a hypochondriac. I hate this. My solution is to now isolate.  I really do look forward to hearing any advice or hearing that maybe, just maybe this is not just in my head. 

Kind Regards

Rachel

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Hi Rachel,

Sorry you are having such a rough go of it. 

Based on your troubles with the soft tissue healing in different circumstances and your joint pain and POTS, have you looked into Ehlers Danlos Syndrome ( EDS )? It is a genetic connective tissue disease with several subclasses. Many of us never knew we had it u til we got older and suddenly had an avalanche of health issues pop up. A good resource to learn about it is www.ednf.org. 

Hang in there!

Katie 

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Thank you. Read all about it. I dont recognize any of the hypermobility issues.

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I have POTS, CRPS type 1, gastroparesis and EDS. I also have an endocrine syndrome called polyglandular autoimmune disease type II. My endocrine diseases from that syndrome are Addison's, thyroiditis, early ovarian failure, celiac, and a few more. I also have a rheumatological disease called undifferentiated connective tissue disease which is best described as something between lupus and rheumatoid arthritis that won't declare itself one or the other. I have symptoms from each.

If you have CRPS, it's apparently not uncommon to also have EDS, gastroparesis and POTS. My specialists are all wanting me to go to Cleveland clinic for the POTS, which I'm very symptomatic from. I'm interested in how your trip goes. That trip may be in my future if I'm strong enough and can get support to help me do the trip. 

Your eating problems may be coming from gastroparesis. Mine has gotten pretty bad. They tried to put me on a feeding tube but I'm managing right now with liquids and blenderized food from my Vitamix. Most people with gastroparesis don't need a feeding tube but you may have to modify your eating quite a bit. I find this very difficult. 

I'm having some tests done next month by a leading gastroparesis specialist. They're doing an EGG and a breath test for small intestinal bowel overgrowth (SIBO), which I'm sure I have as do most gastroparesis patients. That could be causing the bloating and some of your other problems. I'm hoping they can manage the SIBO better once I get the results and a solid plan but it will be a constant battle. After the EGG results they'll decide if they want to try botox on my pyloric sphincter as a test to see if a ballon stretch type procedure will let food out since my stomach won't empty.

I'm going next Tues to start a three weeks in a row, once a week, very high dose ketamine infusion (semi coma) to try to control the CRPS symptoms. I've had five high dose ketamine treatments over the past year and a half and it helps for a while. I hope the three in a row will give me some better time for longer. It only really helps the CRPS pain and not the other problems though.

Finally, I'm going to be biopsied for a small fiber neuropathy (also common in these conditions) and they may try IVIG on me if the ketamine doesn't work well enough. There are lots of reasons why I would like to try IVIG. I'm going to push for that anyway.

Anyway, sorry for rambling. But yes, I have POTS and CRPS. You might want to look into gastroparesis.

  

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So sorry you're having such a hrad time Rachel. I hope that being part of this forum will be helpful to you. Knowing you're not alone can be a great comfort! Sending warm wishes

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Hi, I have POTS, CRPS and EDS (hypermobile type) and coincidentally, happen to be exactly the same age as you ... and am fairly new to the forum myself.  More recently I have started having digestive and voiding issues, both of whice seem quite common, from what I've read online and seen on here.

I haven't any useful advice I'm afraid, as I'm really brain fogged today, but have found the lovely folks on here so kind, helpful and supportive and as corina said, it's sometimes good just to know that you're not alone.

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Thank you all. I do feel alone. I know you are all on here but in my day to day life the truth is I am alone. Thats ok. I dont like to talk about it too much either. There is nothing I find more boring than listening to someone go on and on about their health issues, as bad it may sound. So , I am very aware of not burdening others around me. But, just popping in here from time to time my hope is that I can learn a little, pick up some tips and feel a little soothed in knowing, like you all said, that we are not indeed alone. Thank you all

Rachel

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Hi, Rachel. Sorry I am unable to comment on the rsd/crps. A big welcome to the forum. I saw in your original post that your headed to the CC. I've been going there for 2 years now and have made such great progress w/ my POTS. My doctors there are wonderful and so unbelievably bright.  I felt a lot like you do in the beginning, but the doctors there have never dismissed my concerns/symptoms, answer every question I had, spend a time with me and don't make you feel rushed or like another #.  None of my local dr's had experience with my condition or seen patients present so severely. The dr's at CC knew how to help me.

I was also very athletic before getting sick. A lot of us here on the forum describe that pattern. I'm happy that you found us, I hope things get easier for you soon. 

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I really don't mean to second guess you about the EDS but that really jumped out to me as well.  I would be inclined to look at signs other than hyper mobile joints.

We had years of problems and pain with one of my now adult kids and it wasn't until the right specialist was able to pick up on her loose joints, and it didn't look anything like what we thought hypermobility was.

Once you near fifty, most joints have lost their flexibility so you can't go by hypermobility in the same way. But you still have weak connective tissue, problems with skin and healing. Yikes, I know of two people whose surgical incisions did not heal for over a month, one with a confirmed connective tissue diagnosis and one suspected.

 When you are young, active, and have developed muscle, the loose connective tissue isn't always a problem but when circumstances change, the pain from the loose joints can develop.

All that said, I have the same pain in my fingers and I think it's related to allergies and intolerances, too. I used to have all over body pain that allergy meds seemed to deep under control. Then I took something out of my diet by chance and my pain went away. I could go off the allergy meds. Now I sometimes get the pain but I attribute it to allergies, even environmental stuff. If I clean really dusty places, for example, I will have pain the following day. And now it's been rainy for several days and I have widespread pain again. I think it's probably mold spores irritating my system.

It's just a puzzle as to why our bodies get out of whack.

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My son has POTS and most likely has CRPS. A medication that has helped him with chronic pain is Low Dose Naltrexone and it is used to treat CRPS. There is a lot of information online about the medication and some great facebook groups that can give you plenty of information. My son started taking LDN in July 2015 and it took 8 weeks before it started working. It does not work instantly and you cannot be taking any opiates. I also use this medication for chronic pain associated with an autoimmune illness. It started working for me a month later. My son and I are both pain free and most likely will not stop taking this medication. It does help regulate the immune system and helps with other autoimmune diseases.

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