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Newbie: Pots, Mast Cell Disease And Lots Of Pain.


Science girl
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I'm quite new to this site though I've been reading a lot here all year. Thank you for all the things you all share that have helped me understand my illness better. I have called myself science girl as I have had to become the expert to get any help. I haven't practiced as a molecular biologist for 13 years now and find it funny that this part of me has been reawakened to find an answer to my own health.

I have had a positive tilt test for pots and am on mast cell stabilizers as I have a clinical diagnosis of mast cell disease. I live in Belgium and there are no tests for MC activation here expect tryptase which is not raised for me. I did react well to the ketotifen I have been on but still get lots of break through symptoms especially the more active I become putting me back at square one - flat one my back!

Since being on the stablizer I have found I have heaps of pain and immobility in my pelvis and knees. In fact the better I feel (with regard to the fatigue, muscle weakness, flushing and POTS) on the meds the worse my pelvis gets. This is really hard and disheartening. Is this normal for anyone else? If I aggregate my pelvis the next day all my mast cell symptoms are back then the POTS sets in. They say I have pelvis instability and I need to do physio exercises but the exercises cause this reaction too. I know many of you have EDS, is cyclic a problem for you too and how do you overcome it?

I have seen a internalist, endocrologist and bone specialist, physioclinic, cardiologist and allergist. Of which no one can really help me with all my symptoms. Who would you recommend seeing? Would a neurologist help? I get nerve pain in my legs and arms and experience tingling, burning pains and when lying down after prolonged time with my heart raise while upright i get this tingling, buzzing feeling through my body like im surging with electricity and as i recover i have whole body twitches/convulsions (like when people are shocked in the ER). Just recently I have started having random muscle contract involuntarily so much you can see the muscle bending in. This has only happen 2 times but doesn't hurt.

Is there anyone here who lives in Europe or England and knows of a POTS or mast cell specialist?

I feeling really alone and misunderstood. I not sure if I should keep looking for help or just try and get by on what I know now and experiment with the mast cell drugs for relief.

Really happy to be on this site. It's amazing to know there are others out there who understand your world.

Thanks Karen

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Hi Karen,

Welcome. I am new here too. I am sorry for all you are going through. I think you will find a lot of help here on this forum, I know I have.

Could you please tell me how you got your diagnosis for mast cell? My doctors don't seem to know where to send me, what type of doctor would do the testing for this? My endo said an oncologist or hemotologists. Who did you go to?

Thanks,

Kris

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Hi karen. I have a son that has POTS but he has symptoms of mcas also. He is going to see a hemotologist for MCAS. My son does try to exercise 3 to 4 times a week. Exercise does help with the POTS but you have to be careful about the type you do. He rides a stationary bike for 10-15 minutes and then does strength exercises for legs and core muscles. He works with an Physical and Occupational therpist twice a week. Welcome aboard and hope you find the answers you need.

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Thanks for the welcomes especially Katybug when not feeling well. I hope you have a better day today.

Kris4444: my diagnosis has been interesting and frustrating. About a year ago I needed to stop work after a bad flu. My most disturbing problem was after returning to work and getting up from a really successful great meetings feeling nauseous, dizzy and exhausted. By the time I'd get to the car I had to sit there for 15 mins to recover so I could drive. I had no idea about POTS but now this makes more sense. I decided it must be emotional exhaustion but was confused that the meetings were so good. But even good meetings need concentration and problem solving. After 6 weeks of not getting better but worst I found many other symptoms were connected to histamine and I contacted a clinic in England with a few questions and some family history. They suggested I get tested for mast cell activation disorder. I didn't want to go to England if I could get help here and the test cost quite it bit. One day I was doing a cross search on MCAD and PMS since I get worst around my period and I got heaps of articles turn up about POTS. I read up on it a bit and even tho I had lots of symptoms I didn't faint and my hr when I took it only when up 20bpm so I moved on to pursuit getting the mast cell testing.

On a trip back to nz (I live in Belgium now) I visited a local doctor to see if I could get some help. Since I said lying down helps she took a sitting and stand bp and pulse. My pulse went up from 80 to 120 and she said well there's something going on because that's not normal but I have no idea what? I remembered the articles I'd stubbled across and told her about it and she wrote me a recommendation to see a cardiologist when I retuned to Belgium. These results finally got the attention of my GP who sent me to a cardiologist. I actually asked to be tested for POTS. They told me it is rare and they only knew of one case in Belgium! But I had the tilt test and they said yes your positive for POTS with symptoms at an upright pulse of 144. They offered tilt test training but I had such a worsening of my symptoms during and after the tilt test I declined it. Cardio was then uninterested I helping me further. (Patients are expected to do as they are told here without informed consent).

My next step was to go to general internal medicine and they tested me for everything. They suspected a NET as I had a high chromogratinin A but further urine tests were clear and they put the result down to my omaprozole treatment. They could not test for the right markers for MCAD (they didn't even know what they were and they are the 'best' hospital in Belgium!). They said your POTS is caused by chronic fatigue and fibromyalgia. I again had to push this professor asking that these diagnosis don't explain the flushing and rashes and got a referral to Allergy. There they gave me a clinical diagnosis of suspected mast cell involvement and advised treatment for this and gave me advice to go the the Netherlands to a dr who is now not practicing.

Since going on the mast cell treatment and having more mobility problems I went to a physioclinic but they didn't seem to understand much about POTS. I decided to find a bone specialist myself to check if this was the source of the inflammation and resulting POTS. Still waiting for results but don't think it will come back with much. The specialist has worked at Mayo in the US and I was hoping for a different approach. He is also an endocrinologist so I will see what he advices to do.

Looneymom: I did have an X-ray that showed some splitting of my pelvis which is why I think exercise is so hard. Because of the injury it seems to cause more inflammation triggering the mast cells and then POTS. I have tried a stationary bike but even just ten mins for three days leaves me unable to get out of bed. I wonder if I just need to exercise and accept that it will mean these crash days will happen. My experience this last years seems to be pushing through just doesn't work. Everything just escalates until I'm so sick I can't move. The physio I am doing is very gentle clenching of pelvic muscles and I have had to put up the ketotifen as the reaction was so bad.

Sorry for blabbing on a bit.

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Hi Karen,

welcome to the forum! I'm in Europe, The Netherlands so we're neighbors! I'm not an expert in Mast cells and don't know of any specialists on this in my country. Do you work with an ANS specialist? I'm currently working on updating the European Physician's list for DINET and would be able to give you some names either in The Netherlands or in England. As far as I remember there isn't anyone from Belgium on the list (will check on that).

Glad you found us and do feel free to pm me when you need any info!

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So a quick answer to your question kris4444 is a cardiologist diagnosed the POTS with the table tilt test. I don't think cardiology is the best place to be treated though. Our hearts are not damaged so I have found they know about POTS but not always what to do with it.

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Hi Science Girl :)

You are the first person I have come across with this; I actually have the exact same problem as you only it happens whenever I aggravate my back. (I have a disc that pops in and out and indents the nerve root of my spine) I can send myself into a huge mast cell flare up just by putting my back out. I have no idea what the relationship is either. I havesuspected EDS also and know that my spine is very loose. In fact I experienced one of the worst episodes I have had in well over 6 months last night and I am now in a huge flare; perhaps brought on by a small amount of snow shovelling. I hate it and really wish I could find a specialist who could explain to me why it keeps happening? I also cannot exercise a lot because of exercise induced uritcaria (I swell up like crazy and get really sick.....just not worth it!)......I wish I had some answers for you :) but just wanted you to know you are not alone, and wish you the best....hang in there! :)

Bren

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Hi doozlygirl, thanks for the information. I had a look at the site you share on the other discussion. I accidentally posted twice the discussion, newbie .

Bren thanks heaps for sharing you have similar problems. It's really validating knowing it is possible to have this reaction. Have you had physio for your back? If so how did you tolerate it? I also get the exercise induced urticaria but it is the fatigue and overall body pain (where I didn't exercise) that gets me. I flush and my fingers swell. I do not have obvious hypermobility or stretchy skin so I don't think I could have EDS. Is this correct?

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I am still learning about EDS and the different types....not totally sure but you don't have to have stretchy skin or visibly hypermobility I think to have EDS. I have hypermobility in my hands but in alot of my larger joints also....like hips, neck, lower back are my worst. At this point I cannot do anything exercise related or I will react. Same as you I get the edema, flushing, nausea, etc......same with heat and cold....... I cannot do physio as anything like that just sends me into a huge flare up and relapse for weeks.....just isnt worth it. I can very much relate to the fatigue and body pain. I get bone pain so bad sometimes.....especially in my legs that I would prefer amputation and it can last for hours. So far none of my mast cell meds or POTS meds have helped with it......I just keep trying....what more can we do ;) .......it wouldnt hurt for you to see a specialist about the EDS as it can cause a lot of pain...I know there is no cure but there is some treatments for it......also there is a good american mast cell website you should join...... mastcelldisorders.wallack.us......... they have been a lot of help to me regarding the mast cell stuff. Feel free to PM me if you have any other questions :)

Bren

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Many people with EDS don't think they qualify but they do. I had no idea I was so much more flexible that a normal person or that my slightly bluish tint in the whites of my eyes was an indicator of connective tissue disorders. A really good resource to learn about EDS is a website www.ednf.org. Unexplained pain that has no evidence of structural origins on drags or MRIs can also be an indicator. It may not be what you have, but it's definitely worth a look to know how it compares to other similar diseases.

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Hi doozlygirl, thanks for the information. I had a look at the site you share on the other discussion. I accidentally posted twice the discussion, newbie .

Bren thanks heaps for sharing you have similar problems. It's really validating knowing it is possible to have this reaction. Have you had physio for your back? If so how did you tolerate it? I also get the exercise induced urticaria but it is the fatigue and overall body pain (where I didn't exercise) that gets me. I flush and my fingers swell. I do not have obvious hypermobility or stretchy skin so I don't think I could have EDS. Is this correct?

No wonder I am confused???!!!! I know I posted last night, but then couldn't find it this morning. I then thought that my post evaporated then reposted the bit on the docs. HAHAHAAAAAA.

EDS is much more than hypermobile joints. That is just the "classic" version. The classifications have changed over the past few years, but there are several other types out there. I suspect Vascular EDS in my family, as we have multiple generations with aneurysms. My mom has had two types herself: thoracic/abdomal aorta and coronary aneurysms. I have been checked for aneurysms, and thankfully have come back clean, but I've had a rare vascular tumor of the skull, called cavernous hemagioma, and this puts me in that category. Haven't yet chased down the EDS diagnosis, as I am still working on the mast cell and methylation stuff.

I'm heading over to the other thread now...........

Lyn

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