any advice greatly appreciated

i recently put this as a reply to a question i had asked on here and someone on here told me to put this as a question and that many people would willing be able to help , so here goes....

quote....................

" I got diagnosed over a year ago and things are getting worse but with not really any medical help at all. When I go to specialist he says tell my doctor when I go to doctor he says go to specialist. . I feel like my life is getting take. from me and no one cares. I was admitted to hospital at weekend because i could not see a way out of feeling so low due to my health issues also I could not move my hands due to the pain in them from pins and needles. I also have been very unsure on my feet and have started taking dizzy spells. like my i am off balance. And a sore head i cannot shift. I also had huge swollen tongue that feels dead as so much of it had had the taste buds die. . My lips on the inside are all blistery I have N irritating cough and my nose is so dry on the inside and if it doesn't get any better soon I will crack .docotrs ran tests wen my blood behaved to allow them to do so and stopped coming out clotted and then sent me home. . Nothing said . .other than if I still feel same the go to my own gp.

since this, in the past 2 weeks,i am still very off balance, my haemoglobin is down to 10 and i am so so tired. i feel blurry in my eye sight, my nose has its dry spells and my tongue has reduced from swelling but i feel i have no taste buds down left hand side of my tongue. my hands and legs are aching and the pins and needles come and go rather stay permanently like they were a few weeks back. i cannot turn over in bed at night due to the pain, and cannot sleep for constantly back and forward to the toilet.. i do not have a urine infection and my doctor wont run further tests. i get sore heads a lot and although i am wearign my glasses.

i am very low in mood and feel i am banging my head against a brick wall. i am on thyroxin, Plaquenil, venlafaxine , i also have to take a tablet during my menstrual cycle to stop the heavy clotting. i am back now on iron tablets also...

i feel i am on here moaning constantly about my illness and i tried to join the BSSA website but at £25. i find it hard to join as i am a single parent and on low income. . .

i do not eat properly i must confess to but well i'm not a good eater... i love pasta and rice and fresh bread yet my doctor has told me not to eat these. lately if i eat more than pieces of a fruit in one day my bowels cause havoc and i have intense pain in my stomache...

i beg of anyone to help ,,,,,,

7 Replies

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  • Encouraging circulation to the feet and hands so that they always feel warm helps a lot, not just with multiple socks or gloves, but leg and arm warmers. The foods you mention should be avoided, but if you are going to have them, try to find gluten free options. Recently I've been sprouting seeds, beans, legumes and grains, which my stomach really likes: growyouthful.com/recipes/sp...

    Probiotics such as acidophilus yoghurt and various kinds of miso can also aid digestion. Digestion is so important for us: greaterimmunity.com/Files/d...

    I'm developing a website with suggestions for coping with Sjogrens based on what I have tried. It's not quite up to date, as I'm always learning more, but you may find ideas you haven't considered:

    naturesquared.wix.com/sjogr...

    Everybody's unique and we need to have the courage to try things which aren't in the Western medical text books to see what works for us, and when we find something that does we can share it and maybe help others.

  • I have been looking around your website and I am really impressed. Thank you for your effort to share your experiences and research. I am trying to avoid medications and get myself as healthy as nature will permit and your website is very helpful and encouraging.

    Have you read the book Grow Youthful that the website you referenced for sprouting information? If so, did you find it good?

  • Thanks Okebro. No I haven't read the Grow Youthful book, I was just trying to find a good quick link that would explain sprouting, as I haven't added anything about sprouting on my website, having only been doing it for a few months. I can say that my stomach is loving sprouts. I'm not getting heartburn or any bloated feelings, and my appetite is thriving when it comes time for the next meal. Buckwheat sprouts, as well as amaranth or quinoa are great options, but quinoa can get a bit pricey.

    I do own a book called "The Macrobiotic Way": books.google.co.nz/books/ab...

    which combines Western and Eastern dietary theories well, has recipes and diet plans, as well as some simple daily yoga exercises (always best to learn from a teacher) and home remedies. Some of the foods it mentions are a bit obscure, but most of them can be found in good supermarkets.

    Zhineng Chigong has been super beneficial for me also, and YES, I was sceptical before beginning it, but I was pretty immobilised, and didn't want to take meds for it, so I figured I didn't have anything to lose. I live in New Zealand and learnt it through this school of Master Yuan Tze, who has released several books ("Voyage to the Shore") which explain the therapeutic science of chigong.

    yuantzecentre.com/Home.html

  • Hello there . . .

    I am guessing from what you have written that you are probably in the UK as I am - I have a feeling that the NHS is in a terrible place at the moment and it's not giving patients the support they really need. I used to have a GP who knew who I was when I walked through the door but now I rarely see the same person twice and they will even prescribe drugs that could be dangerous for me as they don't know about my health issues (I was prescribed a drug to make my blood clot more for heavy period issues when I have APS/Hughes Syndrome - stupid!). Like you, we don't have much money - I don't work due to the health issues and my poor long-suffering hubby was made redundant 3 years ago and managed to get another job but on a very low salary. Every penny counts so I haven't joined the BSSA website either.

    Like the person above, I think that we need to try and take control of our own health situation - easier said than done I know, especially when you feel so low. Have you thought about changing doctors if you feel that this one is not acting in your best interest? There's not a great deal of choice often granted but it's a thought. The other thing I have done is to improve diet which is helping my kids as well. I found that I was actually wheat intolerant - they tested me for coeliac which often goes alongside Sjogrens but many of us have digestive IBS type issues. I feel so much better since I went wheat-free - stuff in the shops is expensive but it's better if you make your own. The only thing I've not had much success with is making bread and I don't like the bought stuff but at almost £3 for a tiny loaf that's no bad thing! We had gluten free crepes tonight and they were fab - the rest of the family eat what I make too. I try and buy organic where I can - look out for offers and reductions - most of our food seems to have yellow labels :)

    Groups like this are a godsend as you realise that you are not alone out there - do you belong to Facebook groups too - there are a few of them? Often I learn more from other people with Sjogrens than I do from the rheumy - I see her for 10-15 minutes every 6 months at the moment and all she wants to do is put me on very strong drugs - I don't want to go down that path yet as I don't think there's any way back once you start.

    Try and stay positive and let us know how you are doing x

  • Hi

    I am from New Zealand and like you we SS people come up against The Medical people not really knowing always the right thing. We are so individual with the Syndrome that it must be hard for them to get to grips with it.

    At our annual seminar down here we are encouraged to take Flax Seed Oil to assist with dry eyes along with eye drops. You have to find the ones that suit you. For me Polytears drops and Polytear Gel suit me best. Keeping the eyelash area moisturised also helps.

    In my opinion SS people are very deficient in vitamin and minerals. I'm sure our auto immune system just gobbles them up and supplements are needed. Again individual but for me Vitamin B is necessary to keep my mouth blister and ulcer free. Artic Cod Liver oil helps with the dry bowel and Vitamin D3 drops helps with that low feeling. Especially if you don't get out in the sun much. I use a product called Fess nasal gel for my nose but have also started using the Polytears gel for my nose as well as my eyes.

    The gluten thing comes up a lot and I know of a few who are trying this. I think with diet it is good to start slow with changes and incorporate more and more so that you c an get used to the change habit wise as well as the body. I am on a product called Mannatec.. I take the Ambrotose and Plus which works at the cellular level. It is a natural product and helps your cells do there work. The other thing I do is if I do have to take any orthodox medications I always ask my chemist about it as I find they generally know more than the doctors about side effects etc. Good luck and I hope that some of this helps.

  • firstly,i would like to say thank you before i forget to say it ..... i struggle with day to day things as well.. eg:- i read but don't take in what is being said. and i have had to read and re read,, my doctor suggested i do things to stimulate my thought chain so i do a lot of puzzles. but i still don't think this helps....i get a nasal cream for doctor as the lining of my nose was thinning and he suggested i use this. but i havent asked re it being so dry. and as for my eyes they seem moist enough just a bit blurrier just now than normal..i will need to read everything and write it down, and find out what it is you have suggested. as some of the things wether it be food or supplements i havent heard of ,,i have saved the webpages suggested and wil look at these too. just hope i can understand it .. . my doctor wont give me vit b 12 as i am border line everytime i get tested and i also get tested every 3 months for diabetes which is always border line too..... thanks every one ..i was having a low week and just got to end what to do next.....

    thank you all though xx

  • I get rheumatoid arthritis as well but have been on methotrexate for about 4 months now (15mg) and it has really helped not only the arthritis but also the sjogrens syndrome problems. I get in injected once a week subcutaneously and I have 5mg folic acid a day to stop the bad side effects. You could try if your doctors agree and prescribe it. I really feel for you as the despair is the worst part.

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