Sooooo tired...sleeplessness...adrenals?...add-ons...

[karools16]

Since May I have been breathless. Waiting for appt with respiratory consiltant. 18 week wait list. Some days feels like last breath.Bloods showed sugar up and cholastrol 6.9 up. Waiting appt diabetic nurse.Also waiting appt throat scope.I don't know when last I slept right through 1 night. I go to bed at midnight and get up 3/4/5x a night. Dr says nothing.I started with 30mg Pred when breathlessness first started, for 5 days. No improvement, then dr put me on 20mg for a week. Appetite went AWOL. Why? Just like early GCA days.I have a nebuliser.Every day, around 4pm, I crash.Then perk up and ok.When I tried to go from 20mg Pred back to my current 7, I couldn't, so I did 1mg per 5 days until I reached 7mg.My respiratory nurse put me on a new inhaler, which has given slight relief.Dr never ever suggested, but bar 1, our nurses are excellent!Yesterday, was my appt with the Vascular surgeon about the numbness in my feet and pain, which stops me from walking, behind my left knee.

I came away, despondent. The blood flow and vessels are good, but can't tell me about numbness, except to ask if I'm diabetic. Borderline. Also couldn't do anything about dreadful leg discolouration..dark brown colour.

Sorry about the pity party, but feel like it's 1 thing after another with no results.

Unlike Melissa, I didn't even have the usual testing for numbness, but did have doppler.

[Katie019]

Hi karools16,

I can't say say anything that will. help but will keep you in my prayers and thoughts. I hope you get some resolution soon. Bless you

[karools16 in reply to Katie019]

Thank you.

[scats]

My mother had the brown legs she found it very distressing as she was always proud of her legs. Nurse said it was iron from the blood that is deposited and can't be removed.

As she had dementia it came as a new worry to her every day.

Sorry I can't help much only sympathise .

As a light hearted addition,mum did not understand the dopler test and thought it sounded like a dog barking. She was constantly trying to get up to find the poor dog who obviously needed help!

Wishing you all the best.

[piglette in reply to scats]

I had the Doppler test last week. It was unbelievably painful although only for a short time. My legs are now black and blue, I have had bruises with pred but these are real beauties.

[karools16 in reply to piglette]

OOH, THAT.S NOT GOOD. I HAVE HAD STACKS OF DOPPLERS ON MY LEGS AND FEET, BUT NEVER FOUND THEM PAINFUL. Gosh, I think that should be reported.

[PMRpro Ambassador in reply to piglette]

What on earth did they DO?

[karools16 in reply to scats]

Gosh, have never known/seen others with it. There are also patches of white. Surgeon admitted he didn't know what it was. I asked whether it could become gangrenous, but he reassured it couldn't.

[scats in reply to karools16]

not the nicest to look at but I don't think it's dangerous....trousers are your best friend!

[karools16 in reply to scats]

Because I wear trousers all winter, I like to wear skirts in summer. Trousers too warm against legs. I didn't worry who looked this summer. Skirts longish.

[piglette in reply to karools16]

I think I must be getting old, I don’t care any more. I wander around st the swimming pool in a swimsuit. I am not sure people really notice, we are just more aware.

[scats in reply to karools16]

that sounds like me.

[PMRpro Ambassador in reply to karools16]

Patches of brown and white skin could be vitiligo

mayoclinic.org/diseases-con...

Can also be an a/i disorder.

[karools16 in reply to PMRpro]

Thanks . Will read up on that.

[SnazzyD]

Not being able to catch your breath is so exhausting.

Just a thought. Have they tested for Aspergillosis? My father in law who has had asthma for donkeys’ years became really tired with unrelenting breathlessness. Changes in inhalers and the odd steroid did a bit but not enough. They noticed his IgE blood result was really high and tested for Aspergillosis antibodies and bingo. The body’s response the fungus was damaging the lung lining. He was offered antifungal tablets but declined.

I’ve seen the brown stain on legs improve a bit when the vein problem is fully resolved or treated. However, I t’s like when you get rust on light material, it hangs about. The back pressure of blood due to tired vein valves allowing the blood to pool in the lower legs, which causes the tiny capillaries to leak some parts of the blood including iron.

[karools16 in reply to SnazzyD]

Exhausting yes, and people stare.Never heard of Aspergillosis. Will ask gp on 6 Sept. He,s no help, and when I say I CAN,T GO ON, he says he can't help me, and I must wait for hosp appt. I asked him to contact them and ask to put me higher on list. What ARE you supposed to do while waiting? Almost housebound. Sorry for the rant. Been asthmatic since birth, and hospitalised 2016 for COPD. My gp says my curvature of the spine is pressing on my lungs.The surgeon did actually make mention of the veins which could cause the unsightly brown marks, when I recall it now. I really wanted a solution to the pain behind my left knee, hindering my walking.

[SnazzyD in reply to karools16]

Have they ruled out a clot for knee pain/breathlessness? Ddimer blood test is a start.

[karools16 in reply to SnazzyD]

He seemed rather disinterested.Pity. He was a brilliant surgeon when I had an artery bypass 10 years ago.

[Daisychain12 in reply to SnazzyD]

Snazzy that’s a great thought. Did you see snazzy’s post karools? Xxxx

[scarlettanne]

Research CBD oil.

[karools16 in reply to scarlettanne]

Thanks. Have seen on this forum, that many folks on it . Will look into it.