Hints and tips please from my "Scleroderma family"? (new on this website)

[tanya1981]

Dear "family",

It's been only a few days that I came across this forum and I've already found some of the posts invaluable. I was diagnosed with limited sSc in late August and the Internet has been my only advisor...It's good to know that on this forum there is a person on the other side, one that I dare call my family based on the type of discussions occurring...

So here is my story...

ABOUT ME:

- 35 yo white female, living in London, with 2 little and very energetic children (5 yo girl and 21 mo boy)

- no family history of Scleroderma or any other autoimmune disease

- living a busy life with a demanding job in big corporation (managed to switch to a 4-day working week earlier this year for family reasons, and before my diagnosis)

- generally quite healthy and nutritionally conscious, never smoked - fit (170cm, 60kg), exercise conscious (gym 2-3 times/week+ I've always been into sports and exercised), try to watch what I eat (fish, pulses, nuts, greens, fruit, etc mostly)

SYMPTOMS and DIAGNOSIS

- Suffered with severe Raynaud's since May '16 which led on occasions to a permanently purple finger and a digital ulcer on it that took almost 2 months to heal (this is what prompted me to go to the GP)

- Had some Reynaud's since about Jan'15, right after the birth of my son, however didn't seem major at all and didn't bother me (1 or 2 fingers only, get blood back in quickly)

- had some sort of dark lesions under my nail bed on 3 of my fingers. Perhaps some puffy fingers

- no other real symptoms that I could think of as typical for Scleroderma (i.e. no skin involvement, GERD, swelling and pain, calcinosis, etc.)

- diagnosed with limited systemic sclerosis in mid/late August '16 - ANA positive, Anticentromere antibody present. Nailfold capillary suggesting abnormal capillaries

TREATMENT:

- I've been taking 20mg/day Nifedipine since end-August. Still suffering from Raynaud's but no ulcers/lesions/blue fingers at this point

ADVICE/HELP NEEDED:

- I'm clearly early in my Scleroderma journey, but I know there are plenty of you with a lot more info from both personal experience and research. First, I have no idea what trigger caused "the perfect storm" this summer for me to provoke the onset of the disease, however I'd like to minimise those future triggers as best as I could. That's why I described my situation/lifestyle above as it could perhaps help in your assessment and advice. WHAT CAN I DO TO LIMIT THE PROGRESSION OF THE DISEASE AS MUCH AS I COULD?

- I've noticed that when I go to the gym and exercise (cardio/strength training classes/high intensity classes) I tend to get Reynaud's - I certainly don't want to stop exercising but seeing the white fingers is disturbing - WHAT SHOULD I DO ABOUT IT?

- I'm conscious that I need to limit the frequency of Reynaud's - but what is likely to happen over the years if I'm not as successful at limiting the attacks? I'm especially worried about my internal organs..

- Would you recommend any specific alternative medicines/additives to help with the disease (i.e. ginkgo balboa, ginger, fish oil , etc?)

I'd be really grateful to any advice given! Good luck to all of you with keeping this beast at bay!

Tanya

[gindy]

Hi there, welcome to the family

I know it's not the greatest way to end up part of our family here, but as I was, you'll be welcomed with warmth and supportive companions.

Ok, limiting Raynauds attacks is all about combating the temp changes in your body. So, trying to stay warm when it's cold. Gloves will become your new best friend, second only to a few thick pairs of winter socks.

The exercising triggering Raynauds is likely to do with the temp changes when you're exercising. I'd definitely try to start your exercises only when you're quite warm already. But now you've got SSc in the mix, swelling occurs when we're too hot. So there's a delicate balance to be found. If you're doing hiit training, I'd suggest you stop it and substitute a gentler activity.

I use a treadmill to do some power walking, and we've put one in our garage where I can control temperatures. I try not to over do it tho, as I'm pretty sure the heightened blood flow associated with exercise exacerbates my SSc. Walking in general seems to be tolerable, so maybe some hiking might be a thought?

Although I've had Raynauds most of my life, and SSc for 6ish years I'm still finding out what is ok for me and what's out of bounds.

Best of luck hun, and I really hope you find out some useful stuff here, I'm sure u will tho.

Charlie.

[tanya1981 in reply to gindy]

Thank you, Charlie... some food for thought here as I may need to ease it down on the exercise perhaps focus on Zumba/dance and some lower intensity cardio and strenght training...

How about alternative therapy- has anything been successful for you over the years? Massage? Priper nutrition?

[Hidden]

I'm going to have a shot in the dark and say your London gym is air conditioned! Keep your core warm the more exercise the better. Sounds like you've done a lot of research already !

[tanya1981 in reply to Hidden]

Hi there, there is AC in the gym but I can't control that i don't typically get cold when I enter the gym - more so when I start exercising so the best explanation I can come about with is that the blood is redirected to my big muscles to support the effort required and therefore my peripherals get a lot less... but does that mean I really meed to take it down on exercising?

[Hidden in reply to tanya1981]

Raynauds doesn't work like that I'm afraid - otherwise every time we ate and blood was redirected to our stomachs it'd happen too! It's a constriction of the capillaries narrowing them redirecting blood volume into our core to heat it as a physiological response to our core temperature dropping - keep your core warm is the main goal (for instance a tshirt and gloves won't help but a long sleeve top and body warmer without gloves would be more effective). Air conditioning in gyms is set to a lower temp because of all the activity so you'll need to wrap up until you're warmed up. Take it from someone who trains in a warehouse 😂 Exercise improves blood flow to extremities 🙂

[tanya1981 in reply to Hidden]

Hi there- thanks for your thoughts...,I must be experiencing the condition differently as often times I feel hot/warm in my core, but my hands stay cold and suffer a Raynauds attack...I guess I will have to learn what works for me

[gindy]

Hi again,

Tbh non of the treatments I've tried have helped much. The biggest help has been arranging my life in a way that minimises those big temp changes. I find gentler exercise suits me better, when I was hiit training it played havok with my a SSc.

We're all different tho, and as I'm fast approaching my 50's I've not been as exercise oriented anyway, so the gentler exercising has helped my symptoms as well as fit in with my life.

I'd say try a few different techniques, but certainly try getting your core temperature up before and after exercising and see if it helps.

C.

[Kingfisherblue]

hello Tanya

I have suffered Raynards for most of my life, in both my hands and feet. I found the Ssc well mine started in January 2012 but a couple of years to know what it was. When I caught a really bad cold before Christmas. I was so ill with the cold and nothing would shift it. Then Ssc kicked in. I have found that to be horrible. The fatigue gets me. I was never really gym mad, but loved walking my dog. So I make sure I still do that at a much slower pace now. I am 62 in January. I have had a tablet that has wrecked my eyes and have to get that monitored regularly now.

I have such a lot of joint pain and lots of other symptoms plus dealing with the raynards.

My employer does not know how ill I am. But I am being made redundant out of the blue. No warning at all. My illness has never affected my work. I worked full time and did a great job. But I also think my age as something to do with it too. Well no more sitting in a air con office and being directly under the vent. This always made me feel ill.

I live in Telford Shropshire England.

So don,t push yourself to do all the gym. You have two young children that will wear you out. I hope you have a lovely husband/partner to support you. I am so sorry that you have had this at such a young age.

It is such a shock to be told what you have, but now you know you can do be careful not to make it worse. Keep warm in the winter as the others have said. Keep gloves by the door. You may think it is too warm to wear them. But always take them with you now it is getting colder.You will soon get Raynards kick in otherwise.

take care

[tanya1981 in reply to Kingfisherblue]

Well done dear, on staying so strong despite the hardships!

As far as work is concerned, I do believe one needs to let their employer know of their condition - it doesn't mean you will get the easy end of the stick, but just a little understanding always helps.

I will have to take it down st the gym, I guess... i keep running around my son anyways when at home... it is just my job that is quite sedentary...

I am resolute to fight hard with this crazy disease... especially at my age when children need me so much and when one finally feels able, settled and confident...

[Kingfisherblue in reply to tanya1981]

tanya it is just a shock but at least you know. As for work, it is ok if you have an understanding boss and company. I didn't and being made redundant last week after having so many promises and let downs.

We all have different symptoms none of us are the same really. Just start keeping a diary and I usually add a bold section on top of the day how I am feeling today. any problems with the illness joint aches and where etc. I do it in a word document and save it to my desktop on back up on a external hard drive. Easier to find things when you want to search.

[marilynmcl]

I have systemic sclerosis which gives me wonderful symptoms of feeling exhausted most of the time...lungs are shot with 3 types of damage...other internal organs are having to be monitored too. I also have severe osteo arthritis in my knees, ankles and hips and been told I have, after x-rays, fractures to my vertebrae which explained why I had extreme pain in my back and numbness in my feet and leg so was checked for osteoporosis but I don't have this, thank goodness, so put these fractures down to the falls I have had due to my osteoarthritic joints. Am on medication to thin blood for the Raynauds..clopidogrol..spelling of this is probably incorrect.. but any change in temp. at home or outside leaves me with purple or white and numb hands...my nose gets it too! so wear a scarf that you can cover your lower face outside in the cold winter weather..or in the summer too as we have had such a lousy one this year! Others are correct in glove wearing but warm them up before wearing as it takes forever to heat up your hands anyway. My exercise is nil now ...not got enough puff to do much of anything...I just have to walk across the living room..well, when I say 'walk' it is more a stagger and grabbing furniture as I try to get to the kitchen I have run out of breath before collapsing onto my wee perching stool once reaching the sink! I sincerely hope you don't get to that stage and stay fairly free of internal damage at your age....I am in my 60's now...so I wish you very best of wellness and keep on keeping on!

Just wanted to tell you about my problems to let you see you are not alone pet.

[tanya1981 in reply to marilynmcl]

Hello Marilyn, I am so very sorry to hear of all the pain you're going through.. you must be a real soldier! I pray that you have loving family and friends to help you and look after you

[zenabb]

What we have got is not a straight forward journey to forever worse, not at all. symptoms come and go in cycles. It gives you time to learn by experience, see the doctor when necessary and organise yourself. Enjoy your children and life. Aim to find solutions. I worked till I was 72. I am now 87. I have 4 children and 12 grandchildren. There are many ways of dealing with Raynaud's.

[tanya1981 in reply to zenabb]

Thank you for the encouragin words, Zenabb!

[Kathyborkovec]

You should try turmeric it's natural and seems to help me also warm pool exercise I've had scleroderma for 12yeRs now and dose get harder but keep as active as you can!

[tanya1981 in reply to Kathyborkovec]

Thank you Kathy! How do you recommend that I take in yhe Turmeric!?

[Kathyborkovec in reply to tanya1981]

I take it in capsules make sure it has mixture of oil it's stronger that way you can also cook with it has a good taste I get mine at the local GNC store

[Jen3131]

Hi

I developed Raynauds in January this year and immediately noticed stiffening and hand swelling when I get warm. I was referred as my GP thought I had some sort of autoimmune condition. He thought it would be Lupus and was probably as shocked as me when I was given a diagnosis of Scleroderma.

I was very glad to discover this forum because I don't particularly like talking/discussing my condition and various impacts with non-sufferers. I feel they might think I am a making it up!

I am 60 and like keeping fit - I do 2 cardio and core classes plus a Fitsteps class (ballroom version of Zumba) weekly. The exercise has protected my knees which were getting so bad that I was struggling to walk. I just hope I can keep it up - the air con at my gym doesn't impact too badly. In fact I like being cool (not cold) because my hands feel lots better. I really don't think exercise makes me worse at this stage but like you, am concerned about progression. I would just try something else I guess because I know now that I need exercise to protect my knees.

I carry gloves in my bag all the time now and try and protect my skin as much as I can with moisturiser.

I would like to meet up with other scleroderma sufferers, if there are actual groups that meet up, but if I develop something I need advice about, I would not hesitate to contact this online group who have already reassured me and given support.

Kind regards Jen

[Hidden in reply to Jen3131]

I couldn't help smiling at you Jen - thinking that anyone could expect a person to be enough of a dramatist to make up these lousy symptoms or this awful disease?!

I haven't been diagnosed for SSc so far although most of my symptoms tarry apart from I dont often get the colour changes of Raynauds in my hands.

I do have primary Sjogrens Syndrome (confirmed by lip biopsy) with bloods that appear more in keeping with SSc than with Sjogrens. But there is often overlap.

I have Raynauds secondary to my SS and was initially diagnosed and treated for RA. When my children were young I was often very unwell with ears, mouth and eye related problems. Now I'm told that I have Small Fibre Neuropathy with Ganglionopathy/ autonomic problems. I find hot baths make the neuropathy flare up painfully and aerobic exercise of all types leaves me feeling ill because I'm not capable of sweating anymore and have poor balance. Interestingly I first noticed I had mild Raynauds when my RA would start to flare up in my hands during tai chi class.

Now I'm really keen to lose weight after six months on steroids so I have started jogging gently on coastal paths and beaches as I live near the sea. But after each short jog my neuropathy flares unbearably later and I don't seem to be able to drum up a sweat or swallow easily during exertion. I don't know whether this is Sjogrens related or not - but I'm minded just to power walk with my dogs for the time being.

So this post and these comments have been very useful to me also. Thanks Tanya and take care.

Twitchy

[Jen3131 in reply to Hidden]

The thing that is scary for me is that no two sufferers are the same - I have no idea what I may or may not develop! Or want to dwell on it if at all possible.

Currently, I appear to have a thick mucus/swallowing thing going on but then so do some of my aqaintances and they haven't got Scleroderma! I tell my husband that I feel like I have had Botox and he looks at me like I'm bonkers! I give up lol. Plus I work for the NHS and am drilled - take 2 paracetamol and you will be OK!

Keep going and don't give in lightly is going to be motto for as long as possible 😬

Jen x

[Hidden in reply to Jen3131]

This could well be Sjogrens secondary to your Scleroderma, Jen. There is often overlap and gloopy saliva is quite a classic Sjogrens thing. Mine tastes alternately rotten and very salty because I lack moisture. If you have Sjogrens then the only treatment you will be offered is saliva stimulants and regular dental check ups because the lack of saliva can cause cavities and oral health problems and significantly increases the risk of NH Lymphoma (still a relatively low risk though) as well as eventually causing dry, gritty eyes and, for some like me, affecting the peripheral and autonomic nervous system.

Hope this helps a bit - not wanting to panic you of course but it's worth getting the Botox lips and thick saliva checked out with your rheum I would say. And drink up to 3 litres of water a day to avoid dehydration and keep everything moving.

I'm always fretting that I'm showing signs of Scleroderma now because of the pattern of my +ANA 🙄 There's nothing like having one or two autoimmune diseases to make you worry about getting more!

[Jen3131 in reply to Hidden]

My sister had the saliva stimulants and gave me a box to try. They had zilch effect - I think a sugar free sweet could have had a better impact. I have spoken to my dentist but there is nothing he can do at present. I am seeing the rheum at the end of the year so am making a list ! It's a bit like the aching feet - that's a Lupus symptom when googled. There must be so many overlaps 😬

Thanks for the response - much appreciated.

Jen

[Hidden in reply to Jen3131]

I didn't know about the aching feet being a Lupus thing - lots with RA have it too . There is a lot of overlap it's true. My rheum said I have lots of crossover so it would be hard to pin any one connective tissue disease down - but the lip biopsy proved I defintely do have Sjogrens. The saliva stimulants don't help me much either because,despite a yiucky taste all the time, my mouth isn't very dry at all.

[Jen3131 in reply to Hidden]

My mouth was only unacceptably dry when I was taking antihistamine. I haven't got RA at this point in time.

[Hidden in reply to Jen3131]

Yes antihistamine and certain antidepressants used for pain can cause this problem too.

[Hidden in reply to Hidden]

Hi you might find building muscle better weight loss than cardio - muscle is a hungry cell that requires a lot of energy to maintain so growth of muscle will result in loss of fat cells (where diet remains stable) it might be easier with your symptoms to undertake strength training than cardio x

[tanya1981 in reply to Jen3131]

Hi Jen, thanks for your thoughts...There are suppirt groups as far as I know across the Uk- check out the SRUK site...