Hello Everyone: As It Says I am new... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Hello Everyone

QofL
QofL

As It Says I am new here. So here is me opening up and asking for help from strangers on the internet. This is going to be interesting.

I am 41 years old, quite fit (well until recently that is) engineer working as the IT Manager. I am alone, as in no family but my cats and dog. I live in Istanbul, Turkey.

I have been diagnosed with scleroderma approximately 4 months ago following a very intensive and expensive series of various misdiagnosis .

(in order;Diabetic Nephropathy, You are fine, Rheumatoid Arthritis, Lupus, Lupus SPL, Leukemia).

I do not blame them since being a Type 1 Diabetic with insulin dependency and Blood Sugars running between 60 to 400 at the time made it nigh impossible for them.

It has been a roller-coaster as you can imagine.

I am generally happy with my lead rheumatologist and my endocrinologist, both are great ladies but they are unwilling to come clean with what is ahead of me. In some cases, they are being flat out "cagey".

Every week I develop a new symptom and they go like, yeah this could happen or, we were expecting that and shove another drug down my throat or veins.

In just 4 months, or 11 since the onset of early symptoms, I have started developing kidney failure, shortness of breath and dry coughs are; bad; fluid on the Heart muscle, Hyper-Tension. I can barely move due to sensitivity of my skin and the overall pain. Not to mention other gastro related unmentionable bodily functions going totally haywire.

Is there anyone here that has or is in contact with anyone who have combination of Type 1 Diabetes and scleroderma.I would like to find out what is ahead for the short term and if wanted, would like to explain what is ahead for them.

P.S. I hate Doctors more now!

13 Replies

No diabeties. But I did have a renal crisis that was linked to scleroderma. Almost kidney failure. It doesn't mean the same will happen to you but dont ignore it if you start getting massive water retention and nausea.

I have managed to stay away from dialysis by cleaning up my diet. I didn't realise there was anything bad with it at the time. But I now largely stay clear of processed food. I don't use a microwave any more. Limit my dairy intake and take care not to overdo the animal protein.

It all sounds drastic in one go, but I sort of morphed slowly in that direction.

Personally I believe some if the drugs that they put patients on don't exactly help. I have hypertension as well but I think that is possibly related to kidney issues.

If you look up the alkaline diet, you may find something close to that beneficial.

I do think doctors could sometimes provide more info. But sometimes what a patient might hear becomes a self fulfilling prophecy and it doesn't necessarily have to be if you do what you can to take care of yourself.

Please excuse my ignorance but why don’t you use the microwave anymore? I am also at early diagnosis stage (and beginning to be distrustful of drugs) so any alternative information interests me. Thank you.

I have found having a microwave helps me to fall back into bad habits of relying on quick and convenient foods rather than those that are best for me nutritionally. It's disappearance has provided space for a juicer and nutribullet.

There are also some who suggest it changes the food and possibly not in a good way.

But I got rid of it mainly to force me to prepare better meals.

Thank you - I tend to only warm things up in them anyway.

QofL
QofL in reply to Jen3131

Hello Jen, overnighthearingloss already explained but I thought I would pitch in with some engineering knowledge.

Microwave ovens works by exciting the water molecules in the air. Exciting in this context means, making them move faster by instilling or imparting energy on them by electromagnetic means.

If anything has more energy, it moves faster (excited) and gets warmer.

Although some call it radiation, this is accurate in literal terms but inaccurate on everyday language.

It is just like applying current / electricity to your kettle's resistor to make it heat up.

Only this time, there is no resistor, you basically apply electricity to the air pocket in your Owen which heats up the water molecules which heats up your food.

I have tried to keep it simple, apologies, no offense intended.

Jen3131
Jen3131 in reply to QofL

Thank you - no need to apologise. Great explanation.

Sooo sooo very sorry Qofl

😊🌸🌿🦋

🤗🤗🤗💗💗💗😘😘😘🙏🙏🙏

😊🌸🌿🦋🙏

Sorry to hear you are going through this. Scleroderma, in all its guises, is a rare disease which has many forms. So hospital consultants often have little knowledge of how to treat symptoms. It’s worth reading all the advice on the various support groups, such as the UK’s sruk.co.uk and the USA’s Scleroderma Reseach Foundation. Some of the drugs you are being given could be causing some of the symptoms. It’s worth reading the labelling on each of them. There are centres of excellence around the world that specialise in systemic sclerosis and related autoimmune diseases. You could try and get a referral to one of those? The first thing though is to make sure you have all the facts yourself. I hope this helps a little bit. Best wishes.

Dear QofL,

Don't be afraid to receive info from folks in this group. They have been a great source of help for me, the mom of a 34-yr-old daughter whose official diagnosis was approx 2 years ago. She's had Reynauds since her teen years, and like you, was very fit and active, especially into Thai kickboxing prior to her diagnoses. BTW, she resides in the Chicago area.... is not married, no family of her own AND LOVES CATS!

She has had the gastro/dry heave-vomit issues, the dry coughing (which a simple post nasal drip medication helped immensely to alleviate), almost constant pain in her legs, and fairly significant lung capacity loss. She's been in the E.R. for various infections on an annual basis.

Just prior to her diagnosis, her dad, my husband, was diagnosed with lupus!! He was approx 69 yrs old when diagnosed. His mother had rheumatoid arthritis.

All of that to say that you may want to inquire of your birth family for ANY sort of autoimmune disease history. Secondly, as SheepJane and others suggest, you will have to self-advocate, a bunch. Learn as much as you can. Get connected with as many support people as you can. The Scleroderma Research Foundation DOES offer some good resource material, including some yoga stretches done by video. When possible, only go to specialists who work with scleroderma patients. Try to keep moving .... walking at least. Modify your diet as needed.

Another "tool" that I've heard has done a lot of good for at least one scleroderma patient is something called the Bemer machine, based on Pulsed Electro Magnetic Therapy for Improved Healing. The machines are expensive (like $5-$6) but we don't yet have any personal experience with them. They are German built.

Don't be too down on the Doctors. They probably go to the internet sometimes, just like we do. I have a good friend who is a senior cancer research scientist at the University of Chicago Hospital, and she explained to me that the depth of knowledge acquired by true autoimmune doctors is WAY beyond what a normal medical doctor learns. ;-0

Keep asking questions, and letting us know how you're doing. Oh ... one last thing.... sometimes it seems that multiple things "go wrong" over a short period of time (at least ni my daughter's case), followed by a leveling off of any new symptoms for another good long stretch of time. In other words, don't be too frightened by what your body is doing right now.

Blessings,

Pat(ricia) Schultz

QofL
QofL in reply to Patishna

Thank You Patishna,

I think I understand your situation more than most. Lost my Mum in March after a 4.5 years long battle with lung disease. I can only try to imagine how much harder it would be to deal with 2 chronic diseases in your family. Not only the emotional roller-coaster but also the extra strain on the family budget among other things.

What you are describing about your daughter is closest I have seen to what I am going through with the added flavoring of diabetes.

We have had no autoimmune disorders in my family, my father is still alive, we are just not that close.

Being a typical over educated overachiever, I tend to do things the only valid way, the epic way:) Type 1 Diabetes when diagnosed was epic, woke up in ICU after 27 days. The current case of scleroderma is also, according to my specialists, is the most aggressive form they have ever seen, worthy of a research paper. Their actual words.

Funny enough, one of my colleagues, who is also a yogi has been trying to get me to start Yoga, at least for the breathing exercises. But because of the corporate hierarchy in play, I have been reluctant to take her up on the offer and to be honest I am too busy to find someone else. But I promise to make an extra effort, soon.

May I ask, how your daughter is managing her pain levels? Until this current condition, I didn't even take paracetamol for a headache.

What the doctors are prescribing are usually considered in the opioids category and do make me drowsy and confused. So I am unable to, unwilling to use them.

I am able to handle most of the pain but have so far not found a solution to the burning feeling on the skin. Hot water helps, so does bepanthol lotion to a degree but both are not valid options while actively working.

All the Best

Patishna
Patishna in reply to QofL

Dear QofL (seems that might stand for Queen of London??? :-)))),

Whether "epic" or not, I can't say, but the loss of your Mum might just have been the trauma that tipped you over the autoimmune edge. My father died of COPD (lung disease from smoking) and my father-in-law from lung cancer...it wasn't pretty, either case. HOWEVER, I count being with them at the moment they passed from here to eternity as some of the most precious moments of my life. That aside, death is just terrible, and I feel very bad for you that your entire body has been so traumatized in the wake of your Mum's passing.

Watching the insidiousness of scleroderma hacking away at my daughter's body, and especially her lungs (for you, it's y our heart) …. is almost unbearable at times. The pain in my daughter's legs specifically, was occurring approximately 1 year prior to her official diagnosis. It was also during her peak Mui Thai training … so she was trying everything to alleviate that pain.

Like you, her case must have been deemed aggressive as she was put on a medication called Cellcept. I have cut, and will paste below, a small description of this drug, which admittedly makes me cringe all the more. However, her Rheum at the time felt it was the best option for keeping her lung capacity loss from deteriorating any further.

"CellCept (mycophenolate mofetil) weakens your body's immune system, to help keep it from "rejecting" a transplanted organ such as a kidney. Organ rejection happens when the immune system treats the new organ as an invader and attacks it.

CellCept is used with other medicines to prevent organ rejection after a kidney, liver, or heart transplant.

CellCept is usually given with cyclosporine (Sandimmune, Neoral) and a steroid medication."

I don't believe that my daughter is on an additional steroid medication, so to find out for sure, I'm going to ask her! And I will ask her specifically about any other pain meds she might be taking.

She just went into the ER again yesterday. :-( With a 103.5degreeF fever. She didn't stay long, but she has these bouts of spiking fevers that require hospitalization at least annually, sometimes more often. In re-posting the info on CellCept, I saw that this is one of that drug's side effects.

One other thing I can pass along …… you need to get LOTS OF SLEEP! Everyone I know who has either lupus, sjogrens, or scleroderma …. ALL say that they need to rest/sleep a lot. You being the active type, give yourself permission to SLOW DOWN and rest (after your yoga and walks! :-). You need it!

Shalom, or in Turkey they probably say Salaam, yes?

Patricia (is my real name)

Help QofL, I am so sorry for the avalanche of aches and pains and the awful

News about suffering with Scleroderma.

You won’t feel lonely here on this site- there are a number of other sufferers, each going through their own fight while being very respectful and helpful with other people’s symptoms. Do search through the history as you will find excellent advice.

Given the onset of your 2 autoimmune diseases, I would recommend you read a book called “the Chinese study”. I’ve only just finished it and it’s making me rethink my food choices seriously. The author, who by the way is a very popular scientist, advocates a plant based whole food diet and explains in intimate detail the scientific grounds for doing so. You strike me as someone who would appreciate the intellectual rigour of that author and might benefit from the sound advice given.

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My heart bleeds for you, I also had the X rays show nothing, your fine. so for 5 years I told myelf you are OK stop being a whip, until this March I had an *exacerbation* it was then very obvious something was wrong and now my doctor bends over backwards to get me help, free too. It is hard and scary being in a foreign country with complicated diseases like ours, and alone, I just have my dogs. Been diagnosed with systemic scleraderma since May plus 3 other severe lung conditions so my symptoms may have become a little muddled with each other but do have some of the classic SSc ones, my SSc is mainly internal. No one seem to have the exactly same bunch of symptoms. Yes my bodily functions are embarrassingly awry too, going out in public has to be carefully planned. So far I don't seem to have kidney involvement as to me that is scary as I only have one kidney due to severe kidney disease aged 9. The acid reflux, in my case has been quite successfully controlled with diet and a *wedge pillow* that helps with the breathing problems too from all my lung conditions. My cough is controlled pretty well, was on a highish dose from GP but was told by my pulmonologist that high is counter productive, so take low dose of prednisolone (European spelling) 5mg daily. The dry eyes, if you have that, mine is nicely controlled by eye drops from the doc. I chew gum frequently to keep my mouth moist. Dry ears were a horrible experience but it passed after two weeks. Joint pain seems to take turns in deciding which joints it will attack this month !!! I will not take tablets for any of my diseases believing that very often they do just as much harm and prefer to research more natural ones but each to their own, seriously considering CBD oil if I can get it sent here, no chance of getting CBD oil with the THC in it across the border, CBD oil legal here but just try getting it, nope not a chance. I am very lucky in having one of the top lung specialists in the country only an hour away and he has sent my appointments with other specialists, yep getting very fed up with going here and there to seeing this and that specialist, got one at the end of next week and two more before the end of the month, all for different things. Look after yourself and do research to help yourself understand and treat

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