Raynauds disturbing my sleep - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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Raynauds disturbing my sleep

Matty662
Matty662

Hi there,

My names Matt and im new here. Im 28 and been diagnosed with raynauds for about 1-2 years, although i suspect ive had it for longer and less severe.

Since being diagnosed i have been having trouble going to sleep and staying asleep and i suspect its because of my raynauds.

I have had sleep studies done and doctors say nothing is wrong, but i am waking up serveral times during the night and feeling hot or cold, mostly hot though.

I dont know about anyone else but my torso and face feel extremely hot and it always wakes me up and i have to throw the duvet off myself just to cool down. This always takes me ages to get back to sleep!

Its so frustrating i have not had a decent night sleep in years and am going crazy! I always swing from one extreme to the other getting very cold or very hot SO EASILY.

Even when i brush my teeth and wash my face with warm water i always get hot even though its winter and then when i put on my moisturiser i basically strip off with only my boxers on. Then i have to watch TV for about 10mins to cool my body temp down before i can actually get into bed.

Im currently waiting to be referred to a rheumatologist for further studies. Any help would be much appreciated!

43 Replies
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Do you have a red face or increased redness generally in the face?

Hi and welcome Matty662

😊🌿🌸🦋

I’m sorry that you are suffering so much from your bouts of hot and cold spells.

I can relate to them both as I have had Raynauds Phenomenon since age 12 (55+ years now) which causes the cold/freezing/chilled episodes and cyclic with Inherited Erythromelalgia which I inherited from birth by my mother. This causes me to burn up, really escalated age 19 and has continued to progress to its current debilitating state today.

Your thyroid can make you cold if it’s under-active/hypothyroidism.

In my case my thyroid made my whole left side frozen while my Inherited Erythromelalgia made my right side on fire. I was 64 when diagnosed as one of only three globally with my form which salt/sodium triggers flares too.

I saw a 🌟Neurologist to get that diagnosis and she put me on Paxil tabs 20mgs to control the worst of the flares which attacks my head and breathing. It has worked wonders for me.

It’s difficult to find a balance where you can make both flares calm down simultaneously.

I’ve slept for years in short pajamas year round and only under 2 sheets all Winter when the heat spells prevailed. Because I have other overlapping conditions I’ve only been able to sleep in my office chair for the last 13 months.

If you’re mostly hot there are cooling mattress toppers and also cooling pillows sold online that can aid with your hot spells.

For the cold spells you add more covers or opt for socks light weight gloves until you warm up then remove/reapply as needed.

You definitely need to see a rheumatologist to get further tests and treatment.

There is a world renowned clinic site here in the USA 🇺🇸 known for excellence in diagnostics and care that you can visit and research your symptoms /diagnoses. Sorry I don’t know how to make the link:

mayoclinic.org

I wish you a good outcome. Take care and abundant blessings.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

Bec9680
Bec9680
in reply to honeybug

Best advice I have is to find a Holistic/ medical doctor the kind that actually find & treat root cause of problems. Hopefully you will get some answers soon because sleep is very important!

Matty662
Matty662
in reply to honeybug

Do you sleep through the night or do you wake up several times from hot or cold flushes?

honeybug
honeybug
in reply to Matty662

Hi Matt

Decades ago I had constant nightly battles of freeze then burn. It drove me crazy flipping off covers socks and gloves only to have to put it all on again.

Very little sleep for almost 5 decades now. The past 2 decades I have mostly burned up so napped under 2 sheets and wore Summer jammies. The past 13+ months only napped in office chair burning 🥵 up can’t take the covers on me now.

My Raynauds Phenomenon was in constant mode from age 12 -19. That year the burning up cycle started too. As the years have passed by they became cyclic. One always followed the other. Then in 2012 I got a bad virus had a high temp for 10 days. It kept me bed bound. Since then my burning up is most of the time now but the freezing cycles at times are so bad it’s to my core. Hate those days as I just can’t get warm.

With all of this going on very little sleep happens at all.

We are all individuals and it’s unlikely you’ll ever have my experiences.

Best wishes Matt.

EJ 😊xx

Matty662
Matty662
in reply to honeybug

Hi,

Wow I’m sorry to hear about your probelms. So you’ve been dealing with sleep deprivation for years and years. How do you cope? Are you taking stimulants to help with fatigue etc?

Also how are your eyes coping because I suffer from constant eye pain/strain and fatigue and have to rest my eyes regularly throughout the day.

honeybug
honeybug
in reply to Matty662

Hi Matt

😊🌿🌸🦋

Thank you so much for your empathy.

I just accept that this is my reality and with His strength through my steadfast faith I’ve managed to endure this.

The progression seems to be several days with very little sleep then one or two days I just can’t stay awake..almost like Narcolepsy I just fall asleep...even nodded off standing up once while making dinner. That’s not good or safe!!!

I’m also extremely blessed to have a very loving and understanding husband.

The only thing I’m on is Gabapentin for my Neuropathy. Paxil for my Inherited Erythromelalgia. Because Paxil is mainly used for depression and other brain conditions I also have a wonderful sensation of calmness and peace

I’m suffering bad eye pains along with vision decline. They strain easily.

I have Sjogrens Syndrome and the damage in my right eye is mostly a result of my near fatal closed head injury at age seven. Do you have any conditions that complicate your vision too?

I used natural tear lubrication. It helps with the dryness and occasional itchiness.

I’m sooo sorry you are suffering sleep deprivation too. It affects everything about life.

I watched our local news station’s medical reporter discussing weighted blankets. He suffers from fibromyalgia and says it really helps him sleep. Not an option for me.

Also the supplement Melatonin is used successfully by some people. Gotta check with your doctor on supplements for the right dosage and that it doesn’t interfere with your medications and conditions.

Doctor Oz has researched different things to aid in sleeping.

It is suggested to not use cool colors like blues greens and similar tones in your bedroom as those reflect morning/wake up colors found in nature.

He says the warm colors pinks oranges black etc. are found in the evening and are supposed to promote sleepiness.

The usual culprits that interfere with sleep like

Caffeine chocolate late meals foods that create indigestion are no no s.

Keeping the room cool and stop all technology and TV 3-4 hours before bedtime.

A good mattress set is also key for sleep promotion.

I’ve been through most of these and they worked for a while and managed 3-4 hours of fairly good sleep.

Then as my Inherited Erythromelalgia Fibromyalgia and Neuropathy progressed painsomnia took over and the sleepless nights prevailed.

Hope you find something that works for you.

Best wishes for good sleep 💤 to start soon for you.

EJ 😊🌸🌿🦋🙏🤗💗😘😇🕊

Matty662
Matty662
in reply to honeybug

Hi

Oh you suffer from so much I’m so sorry. I’m guessing you have secondary Raynaud?

No I don’t have any conditions that affect my vision. Yea I hate eye strain I feel like I can’t relax my eyes and they are always tense. I’m guessing the Paxil helps you with this problem because it helps you relax your eye muscles.

I also suffer from dry eye syndrome but I feel like when I use them they make my eye strain worse and the muscles tense even more. I have to massage my eyes regularly and recently bought an eye massager to help.

My sleep hygiene is pretty good it’s just hard falling asleep when I’m hot.

Melatonin works for Raynaud? Might have to research that.

You don’t take any supplements for fatigue I’m surprised. I sometimes take caffeine if I workout otherwise I have no strength to do so.

Best wishes to you too!

Hi Matt

Look under my reply I believe Bec9680 meant to answer you.

EJ 😊

Thanks for the replies guys. I had a blood test done and was told my thyroid was fine. Erm another thing is I think I may suffer from low testosterone? Because I’ve had poor sleep for so long, 6 years now I think that’s contributed to the low testosterone and sometimes depression.

Dunno if that will affect my Raynauds.

Yeah I know about the tricks to stay warm or cool yourself down but it’s SO hard to find a balance. For example I might go to sleep hot even in this weather and then wake up cold. So then I would put a thicker duvet on but then wake up hot and around and around it goes.

The best solution I’ve found is just sleep with a thin duvet and accept that I’ll wake up cold. At least it’s easier to fall asleep again when cold than when hot!

Bec9680 yes I’m being referred to rheumatologist. They find the root cause and see if I suffer from secondary or not

Hi Matty662

Thanks for your empathy.

When my Raynauds started at age 12 it was called Phenomenon which is secondary. I have many autoimmune problems which I suspect that are related to my near fatal closed head injury.

This was info my dear friend Barnclown confirmed happened to her brain injury too. She has been and is going through so much. Therefore she is a wealth of info on so much.

The Paxil is for the worst 2nd degree-like burning stabbing needles and poker sensations that include my head and affects my breathing (smothering). But because it was first designed to aid anxiety and depression conditions it also gives me a peaceful calming affect.

I’m still having the eye stabbing pains and muscle spasms that annoy me.

Have you ever tried warm compresses for you eye strain while relaxing?

Melatonin is used for a sleep aid. A lot of patients say it really helps them. I’ve got some but delaying trying it until I can sleep consistently in my bed again.

No I don’t take anything for my fatigue I just suffer with it. I once was on Celebrex but my doctor just took it away. I’ve gone downhill without it ever since.

I can’t use caffeine due to heart and GI issues.

I’m glad that you have wat sounds like a good treatment program.

Keep up the good work Matt.

Best wishes. EJ

😊🌿🌸🦋🙏🤗💗😘🕊

Matty662
Matty662
in reply to honeybug

Hi, sorry to hear about your head injury. Do you not suffer with any side effects from Paxil because it’s an anti depressant? I’ve been considering anti depressants but there so many side effects and horrible stories I’ve heard.

I suffer with eye spasms too! Don’t know about you but it seems like the top eye muscles are always tense and hard to relax and I have to try using my lower muscles more by sort of raising my eyebrows a bit.

My eye spasms are so embarrassing they make me open my eyes really wide and are uncontrollable. Do you suffer with this as well?

Yea I’ve tried warm compress before but it’s hard to get the temp right.

I’ve tried l-theanine before bed which is an amino acid which helps you relax, but it made me sweat during the night and felt even more tired and groggy!

honeybug
honeybug
in reply to Matty662

Hi Matty

😊🌿🌸🦋

Thank you for your kind words.

Regarding the Paxil in the beginning it made me really tired and groggy because I don’t sleep much or good anyway. But after 2-3 weeks of adjusting to it I’ve done fine.

I take it for my Inherited Erythromelalgia and it has worked wonders for the severe pain and flare ups I was constantly having.

The other plus is the calmness and coping strength it has given me. I wasn’t seeking help with that but I’m so blessed at how wonderful it has helped me.

I know we are all individuals and will have different experiences with our meds. However if you are going through anxiety and/or depression you could try it to see if it helps. If it makes you feel worse other than the tiredness and fatigue during the adjustment period you can stop it.

I’m sorry about your muscle spasms in your eyelids. I have had problems with this for years and currently it’s affecting both eyes and both lids. They quiver almost non stop and it effects my ability to see well.

I’m sorry your lids spasm so hard. Mine droop. I think it is more to do with my head injury and neuropathies. I used to take Flexeril 10 mg twice daily and it worked wonderfully for me. But I had to switch doctors because mine attacked me and my new doctor took both my Celebrex and Flexeril away from me. Now these meds are considered tier 3 drugs I can’t get them unless it’s a last resort and my insurance won’t pay for them. Once we reach 60+ the medical board won’t approve Flexeril for senior citizens due to age and the risks it causes in the elderly.

I once heard of electric eye pads that have a constant heat that was recommended for migraine sufferers. Maybe you can search online for them...hope you find them.

I’m going to try Melatonin for relaxing and sleep aid. I haven’t been able to sleep in my bed in 14 months long story once I’m able to sleep in it again I’m going to take it. I’m using my office chair and I’ve fallen out of it twice already I’m afraid the Melatonin might make that occur with broken bones or worse.

Oh I hate that sweating at bedtime. Ugh!!’

I’m sorry you had to suffer that.

I apologize for taking so long to respond. We’ve had severe winter/ice storms and downed power lines. That caused my delay. All is well as the moment from that ergo my reply.

I wish you as painless a day as possible.

Take care and best wishes dear.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

Matty662
Matty662
in reply to honeybug

Hi,

Hope you are well. Doesn’t the Paxil act a vasodilator? So you have to stop taking it in the summer?

I wouldn’t say I have eye lid spasms but the actual eye muscles themselves.

Also I tried melatonin the other day and it did make me feel more tired and groggy and I don’t think it did anything for my raynauds. I woke up the next day feeling so tired I couldn’t exercise as I normally do and had to nap in the afternoon. Who knows maybe it will work for you. I only took 1mg btw about two hours before bedtime. If you do try it make sure you’re not hot when you go to sleep otherwise you know you will wake up frequently and feel even more tired.

I did have a binge last week though lol as I was so tired and stressed. I ate loads of sugary foods with high carbs and actually I had pretty decent sleep on that night. I think the carbs help you relax and releases chemicals etc. Long story short it releases more tryptophan in your body which converts to serotonin. There are tryptophan supplements out there which I may Give a try but not sure as it’s not naturally made in the body.

Hi Matty

😊🌿🌸🦋

This is my second attempt to reply...the first disappeared just before I finished it. 😱😡🤯

The Paxil I take is strictly a antidepressant class drug. It is not a vasodilator as those are used in cardiovascular conditions to open the blood vessels to allow easier blood flow.

Medications are used for many other conditions too.

I have Inherited Erythromelalgia which is extremely rare. Erythromelalgia is a rare condition that causes burning sensations in your body especially hands/feet.

There are multiple symptoms and it is debilitating.

My form of it is a genetic mutation I got it from my mother and her family. I’m one of three people worldwide that has it. It is also triggered by salt intake. Paxil works on the temperature control so it keeps the worst of my flares that attacks my head with agonizing pain and heat and impairs my breathing. So I take Paxil year round.

I have problems with my eye muscles become rigid difficult and painful to move my eyes. Do you have this too??

Melatonin is for sleeping. I’ve not heard if it is used to help Raynauds.

Until you adjust to it it will make you sleepy/groggy. Try to give yourself an 8 hour sleep time after taking it.

I’m sure the binge episode felt good as you consumed it. Isn’t it odd that it makes you feel good and relaxed??? To bad we can’t do that as a treatment without all the weight gain and problems that creates.

I hope you have as painless a week as possible dear. Take care pace yourself. Abundant blessings

EJ 😊🌿🌸🦋🙏🤗💗😘👼🕊

Hi,

Oh I read that Paxil acts as a vasodilator as well. Yes my eye muscles hurt when I move them and hurts when I try to focus. If I relax my eyes then my vision zones out if you know what I mean.

Lol yes the binge felt good at the time! Yes it’s because carbs help release melatonin which helps you relax and it’s so addictive! I’d love it if we could binge and not gain weight! I’m currently having a mini binge as I type this haha!

Edit :Paxil is a SSRI which helps with opening of blood vessels I did my research. I currently take nifedipine in winter and that makes my face flush like hell.

honeybug
honeybug
in reply to Matty662

Hi Matty662

😊🌿🌸🦋

My sincerest apology’s for not answering your last reply. 😳

I’m shocked that I didn’t. I discovered the oversight when I double checked a like by another member.

We had 6 weeks of dangerous Winter storms one power outage and that brought on multiple flares from overlapping conditions. Did not purposely ignore you dear and feel badly that it may have come across as such. Sooo sorry 😐.

You’re right I read that Paxil is also a vasodilator but it is mostly prescribed for the mental conditions. Then as my specialist told me that she had been using it for heat intolerance conditions too which my IEM definitely is positive for that.

I’m sorry that your nifedipine causes you facial burning. Terrible to need meds and have the worst side effects from them. It’s that way for me regarding pain meds. The agony it caused my GI tract isn’t something I would ever take a chance on trying them again. My last surgery I didn’t use any at home. I just toughed it out...even did this with my total hysterectomy and my back/scoliosis injuries.

Sorry for the long explanation.

Ohh yes I get the zoning out and focus eye problems too. I get ocular migraines occasionally. They are the strangest sensation. Have you ever had your vision change over into inappropriate colors??? I experience pink or orange colors in my vision. No other symptoms simultaneously. It’s shocking when it first happens as it blindsides me.

Bless you I feel the same way about the binges. When I’m feeling really really bad is when I tend to sub food for the pain meds. Not good!!!

I hope you’ve been doing fairly well if not good since my last reply.

I’m struggling as usual but push through it as it’s my only choice.

You have a good and painless a day as possible dear.

Take care.

EJ. 😊🌿🌸🦋🙏🤗💗😘😇🕊

Matty662
Matty662
in reply to honeybug

Hi it’s fine we all have lives to live. Yes I do get colour changes and colour spots. I always get the black floaters as well.

I don’t know if you suffer from stress but I think this is one of the main reasons for my eye problems as I suffer from chronic stress.

I’ve managed to control the binges!! Lol my solution is I eat yogurt and granola everyday now keeps the cravings at bay.

Are you currently in employment? I’m looking for work but am embarrassed about my eye problems!

honeybug
honeybug
in reply to Matty662

Nice to hear from you again Matty.

Sooo sorry to hear that you have the color and floater problems too. They are so annoying. Beware of too many black floaters. If they occur I read where this a sign of needing an eye appointment ASAP.

Sorry you suffer from stress too. Yes stress can make our muscles tense up. Lack of sleep and chronic illness are big stressors. Add in the chronic Life stressors and it’s no wonder our muscles tense up on us. I should be contorted into a big ole knot for the amount of stress my life has been in. 😆

Wow I’m happy for you that you control your binges with yogurt and granola. Great healthy alternatives. My IBS and Sjogrens have bad reactions to both now. 😭

No I’m not working. I’m passed the hiring age. I’m sorry you’re embarrassed about the eye muscle problems. Other than working with the public your eyes shouldn’t be a factor in your hiring. As long as you can do your job well that shouldn’t matter.

I forgot to ask if you ever went to the eye doctor to diagnose and treat your eye muscles?

I also forgot to ask if you live in the UK 🇬🇧?

I’m in the USA 🇺🇸 and we do things differently here. But I feel people shouldn’t be discriminated against for any reason except being evil and all that entails.

I hope you find a job that suits your needs and pays well with great benefits.

Take care and best wishes Matty.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

Matty662
Matty662
in reply to honeybug

Hi it’s good to hear back from you too. It’s nice to talk to someone with similar problems.

I had an eye test about 8 months ago and they said everything was fine. I didn’t ask specifically for any eye muscles issues but I did ask about glaucoma and eye pressure. I’ve had these eye problems for about 7 years now so annoying!

Lol you can’t eat sugar? Maybe that’s a good thing as it’ll keep you healthy or maybe you could buy alternatives with sweeteners?

Yes I live in the Uk and I’m also thinking about meditation for my chronic stress. Should help with the sleep and eye problems hopefully.

honeybug
honeybug
in reply to Matty662

Hi Matty662 😊🌿🌸🦋

Thanks for replying. Apologies for my delay. My hubby’s heart disease flared up again followed by my mom going to hospital. She’s back at the facility now.

I’m sorry you are still plagued by eye problem.

Hopefully it will resolve one day. Sooner rather than later.

Yes meditation works wonders. Good for so very many things.

take care and best wishes.

EJ

😊🌿🌸🦋🙏🤗💗😘😇🕊

Matty662
Matty662
in reply to honeybug

Hi,

I’m sorry to hear about your family having problems too hope they are ok.

Yea hopefully my eye problems will resolve! I feel like it’s better when I’m more relaxed so can’t wait to try SSRI or possibly SNRI?

Not sure about SSRI because I flush so bad anyway so don’t want to make it worse! I’m also worried about all the side effects associated with them. I’ve heard so many bad things.

honeybug
honeybug
in reply to Matty662

I’m blessed in that I’m taking SSRI Paxil for my rarest of rare Inherited Erythromelalgia. It keeps my worst symptom of feeling like my head is scalding/burning with millions of hot pins stabbing my flesh while it impairs my breathing from happening. The overwhelming redness and flushing I have experienced since age 19 has been quiet too. Plus my added blessing of calmness is so appreciated.

My only side effect was being extra tired for about 2-3 weeks.

I’ve not had any problems otherwise and very grateful that I have it on board with my Gabapentin; otherwise I think I would have succumbed to absolute madness from the suffering.

The premeds state was a horrific situation I don’t want to revisit.

I pray whichever meds you are given will be perfect for you without any problems.

I hope you have as painless a week as possible dear Matty662.

Take care and abundant blessings.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

Matty662
Matty662
in reply to honeybug

Hi,

Spoke to a doctor last week and decided to try CBT therapy to help with stress. I’ve managed to control it somehow so now not severe I would say moderate and I’ve started taking something called ginkgo biloboa that seems to help with stress, anxiety and low mood. It also helps with blood circulation.

I don’t think I’ll take any SSRI because of so many side effects and also I suffer with occasional acne and I’ve heard a lot of people saying that SSRIs exacerbate the problem.

Ok so now that it’s summer my sleep has been terrible! I’m averaging 5-6 hrs a night with about 4-5 awakenings every Night. It’s so frustrating I sleep with no duvet or blanket and only in boxers and then wake up with a half blocked nose. So then put on a blanket but then get hot! This repeats itself several times until I am no longer able to fall asleep again.

What’s your sleep been like? And do you find it easier to sleep in summer or winter? Do you sleep longer in the winter?

honeybug
honeybug
in reply to Matty662

Hi Matty662 😊🌿🌸🦋

So nice to hear from you again.

I’m glad you followed you intuition about the SSRI. I hope the CBT helps you without side effects.

I took Ginko Biloba (misspelled ???) decades ago and it helped. Had to stop it because of dangerous interaction possibilities with my other meds back then.

Oh the dreaded perils of getting a good nights sleep.

I hate that you are going through this too.

Have you tried just placing a light weight sheet across your torso from about below armpits to mid thighs??

This still allows the shoulders and above plus the mid thighs and below to stay cooler.

When the nights are too warm take an electric fan and place it so it blows out the window. This allows the air to flow over you while exhausting the hot air simultaneously.

There are also cooling mattress toppers and pillows. I haven’t tried them yet.

I found Winter easier to sleep better and longer 5 years ago.

Since then I suffered a back injury from Physical Therapy that was complicated by Scoliosis hEDS OA Thoracic bone spurs in the injury site. I’ve been sleeping well catnapping 24/7 in my upscale office chair. I only get cat naps now so there isn’t much sleep happening.

But don’t give up trying different things as one or more of them will be your answer.

As for your nose stuffiness there are things for this too.

There are breathing strips applied to the bridge of your nose that has a spring like action in it which will attach with an adhesive like skin plasts. It pulls the outer walls of the nostrils outward opening up the airways. Works quite well...the drawbacks: every night use could cause loss of skin layers as I did and it gets costly as they aren’t reusable, well mine weren’t because I lost so much skin.

Recently I saw a reusable one made of probably plastic or silicone that slides over the outside skin that divides the nostrils and loosely resembles a Bulls nose ring when in position.

You can try applying Vick’s petroleum or the equal in your region to decongest your nose. I used that for years until I discovered I needed surgery to correct a deviated septum.

You can use a nasal flushing system. It comes with a pliable bottle a cap with hole and a long soft tube that is pushed into the underside of the cap that joins the cap hole to the bottom of the bottle. You use 1/8 tsp. each of table salt and baking soda mixed with 8 ounces of DISTILLED WATER ONLY. I mix this in a liquid measuring microwaveable container on High for 25 seconds. Then stir solution well to incorporate the added ingredients and pour into your clean bottle. Place the tube inside the bottle securing the cap. Leaning over your sink place the cap securely to your nostril of choice and compress the bottle until half of the solution is forced through your sinuses and exits the other nostril. Keep your mouth open to spit out any solution just in case some solution comes out this way

DO NOT SWALLOW ANY OF THE SOLUTION.

Gently blow your nose.

Then repeat the same process for the remaining nostril.

You can do this twice daily.

It flushes out allergens and pollutions and bacteria safely while moisturizing your sinuses.

Be sure to wash out your bottle and cap system and drain dry thoroughly between uses.

Allow 1 hour before laying down to make sure all solution has time to be removed from sinuses via spitting or blowing.

This is probably more info than you wanted but it is invaluable as it is what my hubby and I have been prescribed by our top ENT specialist. It really works and doing this for years now.

I hope this info is helpful Matty.

Take care friend and I hope you get the well deserved sleep you desperately seek.

I just said a special prayer for you.

You can chat with me anytime.

Best wishes my friend.

EvaJo 😊🌿🌸🦋

Matty662
Matty662
in reply to honeybug

Hey, sorry for late reply been waiting for my blood test results. Ok so I’ve had a letter from the hospital and it doesn’t actually state whether I have primary or secondary but says on further examination there is no active synovitis. So I’m guessing that means it’s just primary.

But still I don’t understand why my whole body is being affected. Every time I talk to my own doctor he says that Raynaud just affects your hands and feet. So what should I do now?

Yea I’m using a thin sheet to cover myself if necessary but when it’s been real hot I don’t have any blankets or sheets on me.

My blocked nose isn’t an issue I just fall back to sleep in about 10mins. I find it’s easier to fall back asleep when cold rather than hot.

Ha thanks for the special prayer I need all the help and luck I can get! And thanks for being so supportive.

honeybug
honeybug
in reply to Matty662

Hi Matty662 😊🌿🌸🦋

Thank you for letting me know your results.

All doctors are taught the basics of medicine via text books of case studies and cadavers (donated corpses).

The rest of their knowledge is via years of personal experiences.

I can personally tell you that Raynauds does effect more than just hands. I have always had both hands and feet where my dad only his hands.

Since my (IEM) inherited Erythromelalgia has progressed to being the worst case (1 in 3 globally) my Raynauds effects anywhere it chooses. It was strange to see those totally white blotches appear everywhere else especially on my face.

So I’m living proof that it does.

Since my Raynauds is cyclic with my IEM now I may be an anomaly but I AM living proof it does happen.

My heart ❤️ goes out to you as this is so difficult to sleep 💤 with as it’s a constant process of adding/subtracting things to adjust the temp to sleep.

Can you afford to go private? If so I would. There would be more testing and better a better diagnosis and treatment.

Keep a home chart of your dates times symptoms what did/didn’t work that you’ve tried to help yourself. This will help in your diagnosis and getting meds. They do offer meds for this now. I don’t take them as I’m on so much now.

I’m sorry this outcome didn’t give you the desired results.

Keep in touch Matty. Would love to chat as long as you don’t mind waiting for replies as I’ve got so many problems one being Osteoarthritis OA in my thumbs which are bone on bone and movement limited frequently.

Take care my Raynauds friend.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

Matty662
Matty662
in reply to honeybug

Hi,

No way can’t afford to go private. All they recommend is nifediphine for raynauds but that’s just to take in the winter. I don’t want to take anything for summer but as I said I’m taking ginkgo biloba for low mood and stress and that acts as vasodilator improves circulation.

So I don’t want to stop taking that and I don’t really want to take anti depressants as I suffer from occasional acne don’t want to aggravate that problem.

All I’ve found that helps a little is if I’m totally relaxed, but thats hard as it’s like a cycle. Bad sleep stressed and then poor sleep because of stress and heat.

Anyway I guess that’s it for me then just nifedipine in winter. So thanks for all your help and support and as I guess there’s not much more to learn best of luck in the future and take care! Oh one last thing try turmeric for bone health and inflammation.

honeybug
honeybug
in reply to Matty662

Thank you Matty662 for replying.

Oh I’m sorry that you are so limited in options. It’s sooo hard when things are complicated.

I have used CDs in the past with sounds that promote relaxation. There are so many available choices in these sound machine aids now. Using diffusers with lavender essential oils is mind and body relaxing.

Epsom salt baths also.

If you find yourself in a stress induced situation and those other options aren’t available applying light strokes to your forearm is a relaxation therapy available anytime.

Thank you so much for the tips about bone broth and turmeric. I had been thinking about giving them a go.

You take care Matty.

Best wishes for relief and relaxation soon.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

Matty662
Matty662
in reply to honeybug

Hello it’s been a long time. How are you doing?

I wanted to post because I think I’ve found some interesting news! So normally I take 3000iu d lux oral spray (vit D) everyday because I wanted to boost my mood. But recently I’ve noticed heart palpitations and I stopped taking them for about a month. Now that’s helped with the palpitations, However I’ve also noticed my raynauds is worse!

I get more attacks and my body feels even more sensitive! I get cold easily and hot easily and am particular afraid of the cold. I’ve also noticed leg pain and numbness whilst sleeping oh and more numbness in the hands.

I’m thinking maybe people can give this a go?? I’m going to try taking less vit D to see if it will still help with the raynauds and not give me palpitations.

I’ll keep you updated!

honeybug
honeybug
in reply to Matty662

Hi Matty.

Yes it’s been awhile hasn’t it.

Thanks for asking...been flaring but trying to push through them all.

Wow...sounds like you have made a big discovery. It’s worth a go I think. Sooo sorry you’ve had heart palpitations but sounds like you’ve made wise choices and now know how to titrate it safely.

Best wishes for success my friend.

Do keep in touch with your outcome.

Hugs and prayers.

EJ xxx

Matty662
Matty662
in reply to honeybug

Hello,

So I have been experimenting and it wasn’t the vit d causes the heart palpitations. It was a selenium tablet I was taking.

However I have still reduced my vit d intake to 1000iu a day and I think it does help. I don’t have any leg pain or cramps during night and also my mood is boosted and I feel happier. When I stopped taking vit d on a colder day say 15-18 degrees I would feel chilly indoors but now I feel fine or better than before. I did a bit of research and apparently vit d helps blood vessels relax. This is great maybe I’ll post a new topic with my findings.

Matty662
Matty662
in reply to Matty662

So I have more news. I’ve had to stop taking ginkgo biloboa as I’m having surgery to remove two wisdom teeth and have noticed that I am slightly more temperature sensitive. But not as bad as when I stopped taking the vit D. Having said that taking both vit D and ginkgo has helped me a lot during summer.

Vit D seems to help with leg cramps and numbness whilst ginkgo helps increase circulation and helps with temperature control. I do still flush during summer but not as badly.

honeybug
honeybug
in reply to Matty662

That’s great Matty.

I’m so happy for you and hope that you continue to have positive outcome my friend.

Take care. Keep in touch.

Abundant blessings.

EJ. xxx

I wonder if anyone has looked at your thyroid as it controls metabolism?

I have never had good sleep. I wake most nights covered in sweat (thyroid or infection, who knows though I am hypothyroid). I never sleep any more than 3 hours at a time no matter when I sleep.

I guess, leaving screens alone at least an hour before bed may help, or melatonin is supposed to be good for promoting sleep.

As you have been referred I am sure they will do a blood test and look at the thyroid etc

Good luck

Matty662
Matty662
in reply to Dionne-F

Hi,

I’ve had my thyroid checked about two years ago and everything was normal. Yes I’ve experimented with sleeping aids but I feel overtired if I take them. Because you’re going to be sleeping deeper and being woken up from A deep sleep will make you feel more groggy and fatigued.

I have my thyioed checked like every 6 months . More if the dose has changed

Does melatonin help Raynaud's? I wish I could be helpful. I have endured Raynaud's for over 40 years and feel very discouraged. I am going to get counseling next week or so. I am trying to get over the flu now.

Matty662
Matty662
in reply to beaglab

Hi I tried melatonin didn’t do much for me other than make me feel more tired. I think it can help some people as it helps you relax which helps with raynauds symptoms. Controlling stress is a huge factor in controlling Raynaud attacks

I know just what you mean Matt. I've had Raynuad's for years (I'm old) and have always had trouble keeping warm but in bed I wake up frequently and I'm dripping with sweat, even in winter I have to chuck the duvet off for a while. I've no idea why this happens I always think something has gone wrong with my thermostat. It doesn't happen every night which makes me think something goes wrong and other times it doesn't. I'd be interested to know what your rheumatologist comes up with. Hope someone can resolve your problem. Bet wishes.

Matty662
Matty662
in reply to Betsie

Hi, same here in winter I don’t even use a thick winter duvet I use a summer one. And I also don’t even have pjs on just sleep with boxers. There’s lots of different factors which may trigger attacks such as stress levels, the temp in your room, do you have the heater on? Do you go to bed feeling hot or do you wait until you’ve cooled down before sleeping etc. Even washing my face with warm water sets me off! I’m seeing a rheumatologist next Monday so we will see. Thanks for your concern and best wishes to you also.

Betsie
Betsie
in reply to Matty662

Do let us know what he has to say.

Matty662
Matty662
in reply to Betsie

Hello, apparently I don’t have secondary Raynauds but I’m still confused as to why my whole body is being affected.

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