How often do you feel like this? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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How often do you feel like this?

Sophiebun11 profile image

Autoimmune fatigue

26 Replies

You betcha ! Love your posts 🐰

Brilliant! This is absolutely spot on. Thank you for the giggle 😁

Glad to be able to give you a giggle. I love memes!

Hi Sophiebun11, you have done it again, laughing my head off, so very funny and just true ! Going to collect these in my scrap book and show them to the disbelieving and uninitiated.

.Please please post your shower one as well.

Thank you for making us smile and forget the pain and

worry for a while. Bless you, keep posting.

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

Hi, I posted the shower one under Fatigue Funnies with a couple others. If you don't see the thread click on the bunny in my handle and you'll see it in my profile. Glad you liked the memes. We really need a sense of humor with an autoimmune disease. : )

Thanks for the tip, I am useless with tablets and phones, takes me ages to find threads etc. Keep posting and making us all smile, better than tablets!

Just delivered a few cards to close neighbours, came back absolutely exhausted, that’s present wrapping put off again!

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

I don't even have a smart phone. I have a dumb flip phone, no texting either. That took a lot of energy to personally deliver cards, very sweet of you. I was lazy and just mailed mine, even down the street : )

I am brave about exploring computers and checking out buttons and seeing what they do and if anything happens if I click on something. I figured out years ago my computer won't blow up and if anything gets wonky, just restart the computer and everything is fine!

Wrapping is a chore. I got out all the paper, ribbons and tape on one day, then another day I did all the wrapping. I still haven't put away the paper or cleared up the snipped off bits. The hardest part was standing in line for the ones I had to mail off. I hate that part!

Bkart profile image
Bkart in reply to Sophiebun11

I’m just a coward where technology is involved, I’m scared I’ll wipe everything out! I started w/app and enjoy being in touch with family and friends through that, don’t like texting much. The little I do know is very much trial and error, the emphasis on error in my case!. 😬

Just read your compression socks story, had to giggle and,hoping I don’t offend you here, it reminded me of the scene in ‘Friends’ when Ross gets stuck in the leather pants (trousers to those of us here in the UK not in the know) it was hilarious!

Unfortunately, it’s further to put my cards in a post

box than to deliver them by hand here! After abit of

a grumble from my long suffering husband he does the queuing for me at the post office, thankfully, so I sympathise with you.

Talking about tape, I found a roll that by looking at the label and price I must have bought nearly 30 years ago and it’s still sticky. I shall use it as I forgot to buy any and just hope that my pressies don’t all fall apart before everyone has opened them!


Sophiebun11 profile image
Sophiebun11 in reply to Bkart

Exactly like the Ross in the leather pants episode. I had totally forgotten that. Thanks for that funny memory. I am fodder for a sitcom in my own life. If only I could sell my whacky situations to some writers or producers I'd keep Henry in kitty toys and cat nip forever!!!

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

Here's my crazy story of today. I went to Trader Joe's Market. I was at the customer service desk. They have a very high counter up to my earlobes. They had some artificial topiary deer and some artificial pine garlands stapled to the countertop.

The guy was trying to show me something on the computer so I stood on my tiptoes and leaned over and wouldn't you know I got my earring stuck to the pine garland. I was laughing and so was he. He came around to help me. After I got unhooked, I had pine pieces hanging from my earrings which the clerk helped me remove. We both laughed so hard we had tears streaming down our faces. I said, "I bet I'm the first customer to ever get their head stuck in your Christmas display." We went off on around round of laughter!!! Then he said "I bet you can't go anywhere without a mishap" I told him he was correct. He said at least we both get a great story out of it to tell.

I think I'll stay home tomorrow and rest my knee from my Olympic Klutz Team Captain accident of yesterday.

Stay safe, good thing you're across the pond so I don't involve you in one of my I Love Lucy episodes. You could be my Ethel!!!!!

Bkart profile image
Bkart in reply to Sophiebun11

That takes me back ‘I love Lucy’ yep I could be Ethel and I think you would def pick me for theOlympic Klutz team! In a rush I once drove into town to the bank, after mucking out my horse.

Wondered why everyone was staring at me but thought I just smelt ‘horsey’. It wasn’t until I looked in the car mirror on the way back and saw, to my

horror, that I had shoved my conical face mask onto my head and it looked like a child’s party hat!

To add insult to injury it was covered in horse poop!!!

On the serious side I have just read about your fall,

on the CKD forum and hope your ok. I had a really bad fall 6 weeks ago, fell flat on my face onto stone paving slabs, blood everywhere, ouch! I’ve been on crutches until a week before Christmas.

Like you I damaged my right knee, so swollen

and stiff and my leg was black with bruising. It’s a lot better now but I’m finding that as my skin was already tight and hard with my suspected SSc, it seems to have made it worse. I’ve begun to fall a lot lately and started to think because my skin is so tight, especially around my ankles, my ankle and foot does not bend properly and is causing me to trip? Anyway whatever the cause I do sympathise with you, I now walk around like a ninety year old, shuffle more than walk, so elegant! 🥴😬

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

Thanks for the laugh about your horse manure hat!!! I'm envious you have a horse. I hope you are still able to ride without falling off!!!

I used to volunteer at the local zoo and would stop at the store on my way home and have giraffe or camel manure on my waders and alfalfa hay stuck in my hair. People would ask me if I had a horse, I'd say nope, a herd of giraffe. I got some weird looks.

I never thought about the skin tightening and the falling being related. I read an article that kidney disease gives you a 47% higher fall rate. Who knows. I need to ask my Dr. when I see him in 2 weeks. At least he won't blow me off and say I'm just getting older like my last Dr. When I told my last Dr. I was really fatigued he said "Nah, you're just bored". Seriously, bored, ummmm, NO!!!! That was the day I switched Dr. My new one is great, he takes every issues seriously and checks it out.

Today I haven't had my head stuck to any Christmas displays but I had been waiting for a new modem for my computer from ATT. I opened it and it was almost twice as big as my current one. The wires didn't fit in the holes. I called the tech support. They were talking to me like I was an idiot not being able to put the green cord in the green hole and the yellow cord in the yellow hole. I told them there is no green or yellow hole on the new one and he wouldn't believe me. Finally I got another guy who asked me the brand. I told him. Guess what, it was my neighbor's Xfinity TV Cable Box, the UPS guy delievered it to my address by mistake. Wow what a crazy morning. I was really feeling like a total ditz.

Gosh, I'm so sorry to hear about your fall, that's terrible. Too bad you couldn't have fallen on the lawn or onto your bed. I hope the soreness subsides soon.

Sometimes I feel like I must be in my 90's instead of my 60's. I find sometimes I'm getting unsteady feeling and I start taking teeny little steps like Tim Conway when he played that old man on the Carol Burnett show and I start laughing at myself.

yes i have fatigue also i went down for a nap woke up 13 hours later. the doctor told me pace myself if you do dishes set a timer 10 minutes then sit down 1 hr later 10 minutes more sit down. you do not have to do everything in 1 day. see your primary and explain what is going on and make noise. do not take no for an answer. if your in pain try (wild lettuce extract) ebay or mt rose herbs. love julie

That's a good idea about the timer. I do take pain meds, tramadol which helps a bit. I'm on 11 meds for various medical conditions so I worry about mixing in herbs since sometimes there are interactions. I'll ask my Nephrologist about it. I know I push myself too hard. Once I start a task I keep pushing and tell myself I'm going to finish if it kills me!!! I know I'll never go back to it if I stop. But I am going to try the timer. Great tip, thanks!!!

Bkart profile image
Bkart in reply to Sophiebun11

Agree, the timer idea is very good, I’m now finding I have to rest more often but like you if it’s a better day push myself too hard. I know I’m in trouble when I get this weird tightening sensation under my ribs going all the way around my trunk (feels a bit like having your blood pressure taken but not on your arm).

I read recently about a MS (Multiple Sclerosis) phenomenon which some MS sufferers get when over

tired and they call it the MS hug and it said people with certain other illnesses can also experience it.

It’s not Angina (I’ve suffered from that since having a heart attack) so I do know the difference. It really feels like being in a bear hug and very painful with an aching sort of pain. I’ve only started to experience this since starting with Systemic Sclerosis symptoms. Does anyone else experience anything like this, it’s very strange and I don’t have MS?

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

Yes, I do know what you mean. It's like having a horribly too tight underwire bra jamming into me, but I'm not wearing one like that and it isn't under my ribs. I thinks it's fibromyalgia pain. Sometimes my rib even hurts on the underneath sides. My Dr. gave me a name for it, something I'd never heard of. I can't recall it and he's retired now.

Bkart profile image
Bkart in reply to Sophiebun11

Horrible, thought it was just me, I even try to finish what I’m doing like you when the hug hits. I haven’t been diagnosed with fibromyalgia but thanks another question to ask the Consultant in January. I’m meeting up with another

person on this forum,who lives near me, in January, can’t believe the coincidence.

Like you they are severely affected by

SSc and other medical issues

and I’m really appreciative of the chance to speak in person

and ask questions. So I will ask about this also.

Both of you are a real inspiration in how you deal with

this dreadful disease.

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

Make sure to write your questions down on a little index card and put it in your pocket. If you pull out a huge sheet of paper the Dr. might get worried LOL. I always ask the nurse how long my appt. will last. That way I know if it's an hour long I can take my time, or if it's only 15 minutes I will talk fast and only focus on the most relevant issues.

I hope you get answers to some problems. One thing I've learned is that no matter what you are feeling emotionally or physically you are never alone or the only one feeling it or going through it. I find it good to communicate problems and then it's amazing how much feedback you'll get from others who may think they were the odd person out with feeling that way.

Fibromyalgia is commonly on the list for those who have one or more autoimmune diseases. Sjrogens is another really common one that isn't really talked about that much. It's basically dry mouth and dry eyes.

I am so happy to have people to talk to in this forum. When I first joined it seemed kind of silent compared to the kidney forum. Everyone here is so nice.

Hi Julie, thanks for your helpful post, unfortunately I have to take Warfarin (blood thinner to control my clotting INR ratio) so there is a list as long as my arm of meds, herbs, food etc that impact on Warfarin. Depending on the substance taken can make the Warfarin effect dangerously too high or too low so I have to be very careful. Thank you for your kind concern much appreciated, the timer tip is very good though, always the simple things are the best.

the wild lettuce is from a shaman friend of mine who is hel,ping with my pain since i have high pain syndrome and none of the meds help me any more but the wild lettuce helps immensely. 10 drops morning and night. love julie you can go 35 drops a day.

I just looked up wild lettuce extract side effects. It says to avoid it if you have a latex allergy. I used to work as a paramedic and had constant exposure to latex gloves back in the days on the ambulance. One day I went into anaphylactic shock on the job from the gloves.

I will have to avoid wild lettuce extract. People don't seem to understand that even "safe" herbs can have toxic effects to some people.

Thanks for the referral though, I am happy that it's helping you but it could give me an asthma attack or kill me : )

ask about celebrex and prazosin 1mg for raynaud's and other meds out there and remember make noise i got diagnosed down here in san mateo california not stanford . you could try emergency vitamins see if that helps and black elderberry liquid on ebay might help. get a vitamin panel see if your low on nutrients like B12 or B6 ok. love you angel love julie

I don't live in the bay area. I'm way down in the central valley. My raynauds is just part of my Scleroderma. My main problem is kidney disease Stage 4 from Scleroderma, along with migraines. I can't take any of the Raynaud's meds because they dilate blood vessels and that gives me horrid migaines. I also have extremely low BP 88/55 so must be very careful about what meds I take. I find it's not good to recommend things to others without knowing their complete medical history or the side effects of the medication or being a medical professional.

I have had my vitamins tested my B12 is low because I have pernicious anemia which is genetic I've had it my entire life and used to get injections now I use patches. I also have very low Vit D, my level is 12 despite taking 50,000IU prescription Vit D weekly. I trust my internist to take care of my medications and my Nephrologist. All my specialists, including my Oncologist work together so they don't give me any meds that interfere with my treatment from one another. I am not going to throw any OTC meds, OTC herbs, or OTC vitamins into the mix without them being prescribed.

I know you are trying to help, but I just can't follow your well-meaning advice. Thank you.

Bkart profile image
Bkart in reply to Sophiebun11

I agree totally with what you have said. Julie seems to be well meaning but not everyone is personally aware of what their medications can interact with and for some these can prove life threatening. Even doctors are not always aware of complications.

I suffer from Aura migraines as well and then diagnosed with Cluster Attack, last year. My GP obviously hadn’t bothered to read my Neurologists

report and tried to prescribe Triptans, despite the fact that I was allergic to them. The triptans also would have reacted to my heart meds and medical history of TIA

and could have been lethal in my case.

I now always ask a Pharmacist

before taking anything other than my prescribed meds. In fact it was my pharmacist who insisted I now carry an Epipen as my Doctor had not picked up on my allergies etc.

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

I have Migraines too. I only react to the 100mg Sumatriptan because it has orange dye in it. I can take the 50mg. My father had Cluster Headaches.

I try to remind my pharmacist to only give me white pills or capsules that I can transfer to clear veggie caps. I also make sure to google all the interaction of meds. My Dr. tries to be very careful.

I've been using EpiPens since the 80s. Luckily, I've had them on hand for a bee sting and a terrible clam chowder incident at a wedding rehearsal dinner for a family member.

We really need to be our own advocates as well as getting a good medical team in place. Our fur babies need us to stick around!!!

Hi Sophie, hope you and Henry had a good Christmas.I read your profile and goodness you have packed a lot into your life before coming down with Scleroderma, so interesting to read about it, especially your love for animals. You have done so well to stay so positive and I agree about sticking around for our fur babies, I am learning to take each day as it comes and count my blessings.

I’ve only had the Epipen recently and was a little nervous about it but having had near misses with Red Bush African tea and the drug Gabappentin in the past I know it’s there to help me. Hopefully I’ll never have to use it though.

Hope your Dad wasn’t too bad with Cluster, they can be horrendous. As soon as my eyes start watering I know ones coming on.

You have such a good way with words why don’t you try writing a book about your whacky situations,or even a script for a sitcom idea. I’ve always secretly wanted to write a book so race you to the best seller list!ha ha.🥴🐾

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