Still Bodyaches : Hi it's been about a... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,404 members10,613 posts

Still Bodyaches

Debbweb01 profile image
15 Replies

Hi it's been about a week now that I have these bodyaches, sweating profusely, & fatigue and weakness! I know I have 3 autoimmune diseases, but when does it go away! I take Lovenox shots so I'm coagulated! Shud I go to doctors and who do I go to? My Hemotologist? I'm confused! I have Sjogrens too! Maybe it's that?

Written by
Debbweb01 profile image
Debbweb01
To view profiles and participate in discussions please or .
Read more about...
15 Replies
charlieab profile image
charlieab

Hi Deb

I cant offer any advice, just a litte bit of support. I know multiple autoimmune conditions can be hard work. Sometimes the right thing to do for one condition is the wrong thing to do for another. And then you can be stumped as to what condition is causing what symptom.

Sounds like you have an awful lot to deal with atm. Maybe it would be worth seeing someone to just check for stuff like infection or medication side effect?

best wishes

HollyHeski profile image
HollyHeskiAdministrator

Deb, youve been going through it for weeks now, with your bad asthma attack, then fevers, APS & SS etc. Your immune system must be shot to pieces, you are totally run down and must be exhausted?

I emphasise with you, I cant suggest who you should see as I have no understanding of the us medical system but you should try and see someone and get a complete check up.

I really hope you feel better soon xx

MaryF profile image
MaryFAdministrator in reply toHollyHeski

I will also add that some time back you were looking towards testing your thyroid more adequately, did that happen? MaryF

Debbweb01 profile image
Debbweb01 in reply toMaryF

Had thyroid checked a year ago! T3 and T4 all ok! My sister insists I have thyroid problems she said since I have trouble with my throats they need to check for nodules! I'm all confused over body aches! Just want them to go away

Wittycjt profile image
Wittycjt

Maybe can you put a call in to your Dr? I believe you said Dr Donnelly takes care of you?

Manofmendip profile image
Manofmendip

Deb

I agree with my colleague, Holly's advice.

We cannot advise you on this as: (a) we are not medical professionals; and (b) we do not know the workings of the US healthcare system.

I do hope things get easier for you soon.

Best wishes.

Dave

Debbweb01 profile image
Debbweb01

Thx for all ur replies! I did some research on Sjogrens! I think it's called autonomic Sjogrens! You sweat, but there are bodyaches and all kinds of things! I'm very depressed and don't want to leave my house! I just lay around and do nothing! I'm just disgusted with all this! I was diagnosed with fibromyalgia years ago, but since my diagnosis of APS I'm not sure what I have! It's not like me to just lay around! I think going through what I did with my husband exhausted me and ran me down and this too shall pass! Your support is unwavering! Thx Godspeed!!!

AnnNY profile image
AnnNY

Plaquenil might help with these sort of symptoms from your autoimmune diseases. Rheumatologists are the ones who prescribe it. If you are really miserable a short course of prednisone might help. Again, usually your rheumatologist would prescribe it.

Lure2 profile image
Lure2

Hi Deb,

I can not give any advice either as you know so much yourself nowadays.

I can only say that I think a lot of you and hope your steph-son and your husband are ok at the moment.

I think you need a lot of rest and good food for the stomach but also some sort of exercise. Fibromyalgia is usually some other autoimmun illness. As Mary says have you checked your Thyroidea thouroughly lately?

Today your president Trump has a meeting with pres Putin in Germany. Hope it goes well.

Greetings from a beautiful summer-Stockholm

Kerstin

Sara_A profile image
Sara_A

I'm glad u mention the profuse sweating as I have this too! It's nightmare and so embarrassing I get to the point I don't want to go out. I literally sometimes need a shower after having a shower! I've had the fan on for months! It's my head that gets sweaty and it drips off my head. I asked my gp but he put it straight down to my zomorph but it started before I went on it, but he did bloods said all ok so it must be the morphine! I am on lots of meds so maybe it's just all that but I hate it. I can be dripping in sweat after just washing up so as for hoovering that's a definite shower job!

Does anyone else have this issue and what is it?!

Debbweb01 profile image
Debbweb01

Do u have Sjogrens Sara A? I think it has to do with my autonomic nerveous system! I researched it! I'm in Air condition and sweating badly! I can't take hot showers as I sweat in the shower ! Take cool showers cuz I'll sweat after hot shower! Horrible

KellyInTexas profile image
KellyInTexasAdministrator

Deb, I figured it out!!! You've worn yourself out from using too many exclamation points!!!! It's taken too much energy from you!!!!!

( my goal in life is to try to make you smile at least once a week! You've gone through too much! Way too much! Seriously! First your leg. Your son. Your husband has been so sick. Recently your mouth sores. Last two weeks you were quite sick. Asthma attacks...

Wait. Wasn't my post supposed to cheer you up????

Ok. Let's look at the positives. Have you lost your leg this week? No? Yay you!!!!

I know where my tooth brush is, too!

Deb. You and me, we are all right, girl. We got this this week!

You forgot to remind me! No tooth brush in the freezer! And you - don't hide your leg in the closet!

❤️❤️❤️❤️

Now stay well hydrated and if you feel worse in any way call you sisters Nan or Anne. They will know what to do with you. We all love you Deb! ( warm soaks in the tub ease my achiness. I wish it didn't make you so overheated. )

Also there is a multivitamin called K free for Coumadin patients that will not affect INR. Order on amazon. About $35.00 maybe you are just needing a boost?

I wish you a big hug! If only one could make your ached and pains subside...

Debbweb01 profile image
Debbweb01

Thx Kelly in Texas! No I know where I put my leg! Lol... keep it in living room behind my chair! Twice I lost it! Lol... Thx for cheering me up! I'm very down! My son wud have been 35 on July 10th! Bad time for me! I go thru my whole pregnancy and his birth! I don't like earth at this time! Thx love u too! Ur funny!!! GODSPEED

KellyInTexas profile image
KellyInTexasAdministrator in reply toDebbweb01

Ohhhhhh. Yep. That's part of what's going on. The mind, body, soul connection I suspect. I must have picked up that "vibe" all the way down south.

Oh, that's a hurt I can't even imagine.

I think I said the wisest thing I've ever said in my life when I was 10 years old. My dads brother ( my favorite uncle) suddenly dropped dead early one morning from a heat attack at age 41. We drove up quickly to Dallas- a five hour drive. My cousins were my age- a neighbor was keeping them until we arrived. Such a horror. My father couldn't even function.

I remember sweetly telling my father to imagine all the money in the world that had ever been, or that ever could be, and then that that it could just go on for ever and ever and never stop. I told him that our lives here on earth were just one tiny Penny. Then we went back to Heaven with everyone.

That's one way to look at the alpha and the omega!

One little penny, Debb.

Wisdom from a ten year old me. ❤️

It's helped me put a few things in perspective over the years.

Debbweb01 profile image
Debbweb01

Awe how sweet Kelly! GODSPEED

Not what you're looking for?

You may also like...

Bodyaches

Hi I think I'm having a flare up of autoimmune diseases! For 5 days now I've had bodyaches all...
Debbweb01 profile image

Finally went to Doc for bodyaches

I went to my back doctor and he asked me about osteoporosis! I forgot I had that and have my...
Debbweb01 profile image

Still Clotting

Hi everyone hope you are well. I've just come out of hospital after a sixth PE I also had a stroke...
margaretjo profile image

Frustrated and still none the wiser.

I had my St Thomas appointment last thursday where I was hoping I was gonna get some answers to my...
zoe13 profile image

Newly Diagnosed

Hi I'm Debbie from Long Island, New York, USA! I'm a very happy-go-lucky person ! I don't take...
Debbweb01 profile image

Moderation team

See all
HollyHeski profile image
HollyHeskiAdministrator
lupus-support1 profile image
lupus-support1Administrator
KellyInTexas profile image
KellyInTexasAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.