Newly diagnosed with Sjogrens, depressed
Posted , 4 users are following.
Hello al I am 54 year old woman and recently diagnosed
I,ve been undergoing tests (bloodwork, CT scans, etc..) for a few months now. Finally saw a Rhuematologist a few weeks ago and she's certain I have it. waiting for results to confirm.
?I have been feeling numb emotionally all this time but things are now settling in. I find myself crying out of the blue and just feeling crappy!
?I was quite fit a couple years ago, cross fit, Tabata , zumba, traveling, hanging out with friends, dancing. Now I feel lost and useless. I feel my body has betrayed me because my thinking was I'd be 80 still involved in these activities
My joints are achy and stiff at times, headaches, blurred vision, organs hurting/inflammed, no longer hanging out with friends due to fatigue, not knowing what I should/shouldn't eat, can't enjoy a glass of wine. It's simply overwhelming!
?No, not a threat to myself, I do love living just the quality isn't as good as it used to be. I did get inspiration from Lily on this forum who says you can still enjoy life with this dreaded syndrome. She even has a glass of red wine occasionally, maybe one day I will get to that point. Maybe i will find a support group near me in Dallas TX. I also will try to find alternatives to whatever prescribed meds I may be offered by my Drs. I've always been Vegan and Vegetarian so maybe this will help me some. Thanks for reading and all the best to you all
?El
2 likes, 9 replies
aitarg35939 el721
Posted
Hi El
You're in luck: Dallas has a support group! I'm in Central Texas & we have one but I believe that yours is much larger. Contact the Sjogren's Syndrome Foundation for info & contact numbers. the foundation is located @ John's Hopkins in Baltimore. Your group does an annual walk in May or June. You might want to ask some of your friends to do the walk.
Hang in there. There is an adjustment period and grief over what we've lost is part of that, so have a good cry when you need one. As much as you miss those times with your friends, they miss you. I'm sure that some of them would love to have smaller visits. Take one of them with you to the support group meeting.
You will find your way through this. We live with Sjogren's. It doesn't kill us and we must'nt let it kill our spirits.
el721 aitarg35939
Posted
lily65668 el721
Posted
So sorry to hear you're suffering like this, El. Some of us get a bumpier ride with Sjogren's than others. I'm glad if my posts have helped you, but admit I've been lucky.
Apart from persistent tendinitis in both upper arms that's been nagging away for several years now and interfering with my life a little bit, I don't have too many problems. For a year or so, up till a couple of months ago, I had quite severe problems with dryness in one eye that was starting to produce signs of corneal abrasions, but since I've been using some new eyedrops suggested by my opththalmologist that's completely cleared up. Apart from generalised slight stiffness, which is to be expected for someone in their 70s, my only other symptoms at the moment are mild asthma (successfully treated with a steroid inhaler), a bit of peripheral neuropathy, though nothing to write home about, and a recurrence of Raynaud's syndrome, which I hadn't really had for about 5 years. This reappeared with a vengeance a couple of weeks ago - paradoxically when the weather suddenly got much warmer in my part of the world. At the moment, all the fingers on my left hand go white and a bit painful at least three times a day but I don't doubt that will eventually pass.
I had a blip when I was suffering from benign positional vertigo for two months at the start of this year - that's the one where the crystals in your inner ear stray into the wrong place. That completely floored me on some days, but was successfully treated a month ago. The jury is still out as to whether this is part of SS, by the way. One person on these boards says she's been told it is, and one or two sites mention a connection. However, it might just have been a coincidence.
It's important to bear in mind that most people with SS go through flare-ups and remissions - long remissions in my own case. I realise this isn't true for everyone, so I'm not being unsympathetic to those who never get any relief from their symptoms. However, don't forget that the majority of posts on sites like this one will inevitably be from those who have more severe forms of the condition, as they're the ones who need more support from fellow-sufferers. This can give a skewed impression of the severity of the condition, making it appear that all sufferers are automatically going to become seriously disabled, whereas this isn't true.
Just a thought on that vegan/vegetarian diet you're on. You're not relying too much on pulses, are you? That's beans, lentils, chickpeas etc. I was vegetarian and near-vegan for about 15 years, from my late 20s through to about 45. (I suddenly found I wanted to eat a little meat again after the menopause, so reintroduced it into my diet, albeit in smaller quantities than most people eat.)
Anywho, at age 37 - well before I started developing Sjogren's symptoms - I had a sudden mysterious attack of RA affecting most of the joints in my body. This developed very rapidly over a period of only a week or so. Some days I couldn't get out of bed, and I had to have a few weeks off work. I was lucky enough to know someone who recommended a homeopathic rheumatologist, and he quizzed me about my diet as well as prescribing remedies. He was horrified to hear I was eating pulses 4-5 times a week, and said that the form of purine present in these vegetables was even more harmful than meat in people who were susceptible. He advised eating them no more than twice a month - which I still do, nearly 40 years later. He also advised me to cut back severely on my other dietary passion - rhubarb! He said the traces of oxalic acid in the stems acted like uric acid in the body.
I don't know whether it was the homeopathic remedies or the dietary advice (probably both) but I made a full recovery in six months.
aitarg35939 lily65668
Posted
Wow, Lily, that's interesting about what you call pulses. I wonder if folks from Mexico & Cuba have genetic makeup that allows them to consume beans on a daily basis without problems? Not to say that everyone does, but many folks still eat beans at least once daily and many also still eat them 3 times daily - as did I when left on a working ranch as a child one summer. We were also eating homemade dried corn tortillas, so perhaps the lye involved in making those made a difference.
Not to hijack, just am astounded at the dietary info.
lily65668 aitarg35939
Posted
Hi aitarg - no worries, I didn't think you were hijacking!
I think it depends on our individual metabolic makeup, which often comes from way back in our ethnic inheritance. Spanish people, who make up a lot of the Mexican gene pool, also seem to eat quite a lot of pulses, and I believe pulse eating was common among the original South and Central American inhabitants. As mentioned in my post, the doctor did say pulses only had this effect on people who were susceptible.
Not that it's unheard of for different ethnic groups to have different dietary intolerances. After all, Chinese, Japanese, Thais, Vietnamese etc. are lactose intolerant to a large extent. That's why you seldom see dairy products being used in their cuisine. The northern Chinese races are the exception to this rule. They're the Mongolian strain, more like Tibetans, and have evolved to eat a lot of dairy products. Not sure whether native Americans are more lactose-intolerant than others. They were originally from similar stock, but again are more the Mongolian type so they're probably OK.
I've always understood it's an evolutionary effect. The ability to digest dairy foods would have been an advantage in ethnic groups who originated in areas where there wasn't much meat available, or the terrain made hunting more difficult. In those circumstances, the ones who couldn't digest milk products would have tended to die young from protein deficiency. Milk digestion would also have been an advantage in northern climes, where there's less sun, as milk is high in vitamin D.
It's a phenomenon that can be found all over the world, with various food groups and other attributes. An example is the sickle cell anaemia gene, which tends to be widespread in people of sub-Saharan African descent. This chronic disease itself is very nasty (I once saw a sickle-cell crisis as a student nurse) and tends to cause significant shortening of life, so you'd expect it to have died out. However, when only a single copy has been inherited from one parent, the gene has a strongly protective effect against malaria... which is, of course, endemic in sub-Saharan Africa and is itself a major killer.
Likewise, races who originated in climates where there's a lot of sun evolved to have more melanin in their skin and eyes, to protect them from the harmful rays of the sun. Light-skinned people would have had an advantage over darker-skinned ones among races who developed in northern climates (e.g. Scandinavians), as they would have been able to synthesise more vitamin D from the limited sunlight available.
Nowadays, of course, we're all mixed up together, so these differences become less significant. I have (well, had!) dark hair, nearly-black eyes and a sallow skin in spite of being born in relatively sunless Britain, as one of my great-grandmothers was Indian. I'm fascinated by the subject of genetics and evolution, and would love to have studied it.
OK, that's enough or I'll get taken down for being off-topic!
el721 lily65668
Posted
Hello lily and thanks for responding. My physical symtoms have subsided quite a bit. I did two cleanses, a parasitic cleanse and a liver detox, symptoms began clearing up during the first one and continued throught the second one. As you've stated several times, who knows if those cleanses were a direct connection to my improvment or not, It was a reccomendation of my Naturopath. Also as you stated a huge part for me is psychological, I became overwhelmed with the thoughts of trying to figure out dietary concerns due to how horrible I felt a couple months ago prior to the cleanses. I was having SOB (inflammation in lungs), terrible aching mostly in back around my kidneys, fatigue, dry eyes/mouth, swollen tongue, and several other minor irritations. Most faded away except the aching aroundkidneys. I had a CT scan last week, now waiting for Rhuematologist to get back with me on that and the eleven tubes of bloodwork. About diet, I barely consume pulses at all, maybe a couple times a month. I did began eating fish agin in the latter part of 2016 so I am very suspicious about the symptoms gaining momentum 6-8 months afterwards. I had been on a plant based diet since my teens-twenties, began eating a little animal protein in 30's for 1-3 years then resumed plant based diet mid 30's until last latter part of last year. In all honesty something about animal protein and dairy just didn't fit well with my system my whole life, thus why I became vegan in first place..
?Thanks again for sharing and responding. Best wishes to you and i do hope your flareup clears up soon!
?P.S. I'm not big on pharaceuticals either as you can probably tell but did take a steroid the first week to get through the inflammation of lungs and not being able to breathe comfortably!
?PP.S Still not able to tolerate not even a sip of wine
but one day will be able to
lily65668 el721
Posted
I wouldn't worry about not being able to drink wine, El - I probably drink a bit too much of that anyway!
It's funny how our food preferences and tolerances can change over time. When I started going vegetarian, but still eating eggs and cheese, in my late 20s it was mainly financial (i.e. I was skint and couldn't afford fish or meat!) but with an element of concern for the planet too. I thought then, and still think, that it's not tenable for people in the richer countries to go on eating large quantities of meat every day.
Then my fortunes changed, I moved country and got a well-paid job, and realised I could afford as much meat as I wanted. But do you know, I just couldn't get the stuff down any more! It smelled and tasted revolting after only a year or so without it. I ate a little fish at first, then decided I didn't like that either. Over the next year or so I totally lost the taste for eggs and cheese as well, so ended up completely vegan. When at home anyway. I could force myself to eat a little fish when eating out if necessary.
The odd thing is that from the age of about 40 I developed quite severe fibroids, and lost a lot of blood during and between periods. (That's not just subjective - two very public haemorrhages, one of which saw me taken to a hospital, though I refused to stay.) This went on for five years, till I had a sudden menopause at age 45, but I never got anaemic in all that time, in spite of being completely vegan (so no eggs) and not taking any iron supplements. Looking back, I don't know how I managed that. The human body is a strange thing...
The blood loss stopped overnight (literally) at the menopause. I wasn't surprised - exactly the same thing had happened to most of the other women in my mother's family. I immediately started noticing changes in my metabolism - not being able to tolerate a lot of things I'd previously enjoyed. Stone fruits were the first to go - they made me throw up instantly, and still do - then bread, coffee, chocolate etc. And within a few months I started getting a yearning for bacon - which I'd never particularly liked, even in my meat-eating days! Eventually I bought a pack. The taste was wonderful. This opened a gate somewhere in my mind (or body) and suddenly I was able to enjoy the full range of animal foods again. Weird, isn't it?
That was 27 years ago, and these days I'm omnivorous, though I still eat vegan once a week and rely mainly on eggs and fish for protein, with meat or chicken just a few times per month. I've retained my taste for green vegetables and some fruits (mainly citrus) and eat 6-7 portions per day.
I think the moral of this story is not to obssess too much about what you should be eating, but trust your body, and go with what it's telling you to eat or not eat. Clearly if your body is telling you to eat junk food every day then there's something wrong, but I don't think your body would tell you to do any such thing!
el721 lily65668
Posted
HI Lily, thanks again for sharing. Sounds like you finally got to a point of homeostasis with SS and lifestyle.
?Keep up the good work! I won't concern myself too much about having wine, just concentrating on getting sysmptoms under control. Take care!
Elektron el721
Posted
Hang in there! when It seems like things will not get better a small joy will remind you that life is not always controlled by our disease.
Please find a support group. If there isn't onenear you, start one! I'm serious.... it will be difficult but what a goal!
I am61 and live to garden. I thought that was over until I learned to garden laying on the ground and asking for help.
Life dosen't have to suck...but when u feel so bad and no one can see what is wrong with you, it can be difficult.
God bless you,El