Scleroderma & Raynaud's UK (SRUK)
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Noone answers me

I have a few posts on here. Noone has answered me. I'm in Florida. Guess I need to find another support group. Thanks anyways

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Susanissufferingtoo,

Story to hear that it appears no one is replying.

I noticed you have scleroderma ticked as an interest, have you had scleroderma for very long. I’ve had if for just over 3 years. Medication is difficult to get right, it’s a trial and error thing. One thing for certain if you get odd side effects go back and see your GP.

I’ve found this forum very helpful, so give it a bit longer, always good to give as much info as you can.

Take care

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I got diagnosed feb . i also have Raynulds. I'll be glad toget the right meds! Ugh! Thankyou for the reply I appreciate it!

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Hi there, I am not sure if you are getting your replies, but I looked on your profile to check responses and I know I responded to your question about medications and two people responded to your other query. What is it that we can help you with?

Lucy x

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I didn't see them. Thanks tho

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Hey, I just got diagnosed last month . I'm on verapamil i just got out of the hospital for swollen ankles and chest pains. So far wasnt caused from the meds. I was told im only gonna get worse😪 Hospital said that. I'm new and alone to these conditions because we have never heard of them. I have Raynulds too. Just spelled it wrong. I dont know anything except im gping to change my diet

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I'm really hating the medicines

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Where in Florida??? I have a wonderful doctor at the Univerisity of Miami

She changed my life

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No where near . ugh! I see a Tampa doctor

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Oh too bad Susan. I live in Boynton Beach and I was not happy with the doctors in my area. Someone mentioned seeing a doctor affiliated with a teaching university and that is why I see my doctor at univ of Miami. Is there anything like that in your area ??? I am not familiar with that area.

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Not that I know of. I wish

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Before I was diagnosed, I had swollen ankles and legs. My podiatrist had me do an "M" breathing and pressing on my abdomen exercise and rubbing upward on my thighs exercise for lymphatic reasons. Also watch salt intake. I also purchased a Homedic foot massager from Bed, Bath and Beyond and placed it beside my bed using it every morning upon waking. My rheumatologist prescribed low dose prednisone. All seemed to make it disappear after close to 3 months. I would only say not to take prednisone for so long or make sure they check your creatinine levels while taking to ensure it's not affecting your kidneys, as well as monitor your BP daily and if staying elevated, have your doctor check your renal levels. If I were to give any preventive suggestions for this condition, I would go with 1) try to keep your pores open if possible by sweating not by overexertion though (seems like my connective tissue closed off my pores on my forearms thickening the skin and removed the hair) 2) whistling and snapping your fingers exercises to avoid losing the ability 3) mouth/facial exercises 4) keeping your skin moisturized 4) staying hydrated 5) keep gloves close at all times 6) keep up with your rheumatologist, cardiologist and pulmonary doctor. I love the vibration plate I purchased from Amazon. I also love my Conair hand spa from Walmart. Jergens Wet Moisturizer with coconut oil and my bath loofah with a long handled stick are valuable to me. My RX Vit D3 is a lifesaver against fatigue. Kroger has a tea concentrate that I drink sparingly, maybe twice a month. It seems to instantly relieve lower back pains for me. It's called Pappy's Sassafras Concentrate in a bottle. Check with your doctor before doing anything I suggest. These are just a few things that I have experienced. I could go on and on but I realize that you may not have the same complications as me. Wishing you the best.

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Sorry to hear that, hope you're ok, keep posting. I'm in England and don't always have time to read everything so don't give up on us yet, there's lots of useful information on this site and I'm sure you'll get replies soon. Keep well and keep in touch x

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Thanks ! Seems like I'm getting support here now. Wish I lived in the Uk. U.s don't seem to have half of what I've seen that helps people. I'm still not on the right meds. Can't wait for them to get me on the right ones. So far I've had a bad scary experience even ended up in the hospital!! Ugh.

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Hi Susanissufferiengtoo sorry you feel you have not been helped. One of the problems can be that healthcare, meds and systems can be very different in the UK from the USA and this is largely a UK forum. Have you come across Inspire, the USA Scleroderma Foundation chat rooms? inspire.com/groups/sclerode...

There is a lot of activity on there and you may find many more people close to you and even a physical (as opposed) to virtual support group. Although in the UK, I go on there sometimes although I do find some of the American terminology and systems a bit bewildering as they are so different! One thing we all have in common is fighting this disease so I wish you all the best with that!

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Cowhide. So true! I feel the same way! 🤪💕❤️💕❤️ One common thread in US and UK- our ‘advanced’ medical doctors don’t even understand these diseases one bit. It’s all about potent drugs and ‘good luck’. Horrid.

I would like to see a comparison with Asian countries.

Since we have TOTALLY different medicinal ‘solutions’.

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That link isn't as good as this website. Thankyou tho

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Thankyou I wish I lived in the UK. Seems like there's more hope. Idk. I've been watching Youtube for info on this. Some people get better some don't. Prayers all

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Susan. Hello from California. I have Raynauds but experiencing other symptoms for over a year.

Please look into a highly rated TCM practitioner and look up any peer review articles (like NCBI) on these conditions along with Accupuncture and Chinese Herbs. There have been many double blinded studies the past 10 years, and you can view the papers on results.

Does Florida have a Nextdoor App?

Ask neighbors for recommendations. And be sure to avoid a cheaper cost community Accupuncture clinic.

No medical discipline will cure us. But if we can have a few more normal days then that is a victory!!!

I’m sorry you are suffering so. Just goes to show that we can live in hot climates and still have stupid Raynauds. Which western medicine doesn’t understand or can help one bit. And that doesn’t mean TCM can either - but I’m in the process of relieving gut issues through TCM. Many diseases can stem from there.

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Thankyou so much for the reply! I have scleroderma too!😢 I'm new to bith conditions and any information will help me. I seen where I should take fish oil. Vitamin d and yrs ago I tried CMO. Which i found myself and for yrs i felt better. I reversed Fibromyalgia which i still have of coarse. Thinking maybey i should try CMO for these conditions .. I've had nothing but a hard time with these positioned drugs! Ugh

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What is CMO? Does it refer to Chinese Medicine?

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I don't think so. Its herbal and I know it works becauae I've done it before. I'm going to order it next month there are no side affects. Its like taking a vitamin. I'm having a hard time still... The meds thwy give out Is like poison for the problem! What's the best meds for Scleroderma and Raynulds?

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Have you heard of Kalawalla?

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Hi and welcome. I sometimes struggle to find replies because sometimes there seems to be loads of "other questions raised today" immediately below the one I'm looking at. I just keep scrolling down and usually the replies appear.

Also, in the past, I got a mix-up caused by a particular version of my browser running on a specific version of Windows. I contacted HealthUnlocked for help and they advised me of the best mix to use. So this is another step you could take.

support.healthunlocked.com/

I find this forum very useful, I hope you find lots of support here too. xx

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Hi i have the scheloderma antibody marker. I have recently been suffering raynauds on hands. Now my knee joints and bottom of one foot is hurting like toothache. I am not due back at reunatology until july. I have no skin issues yet but was wondering if my knees foot and fingers could be the start of full blown scheloderma? How do they tell at hospital? Pam

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Pam, I am so sorry to hear you speak of pain. I am fairly new to my condition and I don't have a medical answer to your question. I do always seek out "creature comfort". Many years ago, I experienced knee joint pains. Miraculously and without any explanation I can offer, the pain would alleviate when I ate a gala apple (only gala) and drank a bottle of water. You can try it for what it's worth. Feel better soon.

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