Sticky Blood-Hughes Syndrome Support
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Greetings Everyone!!!

Just wanted to check in with everyone!!! I'm staying stable with my APS . I'm still having quite some nagging pain in my legs. My Primary Dr, doesn't seem to really investigate what is causing it. I'm 52 & he contributes it to getting old!! Really!!!! We have a lot of misuse of Drugs in our area. I understand that but he just tells me to deal with it!!! I suffer so badly done days & feel like I can't take the day!! I work a Full time job in accounting but when my work day ends, I just have to come home & go to bed!! Feel like I cheat my Family on quality time that I miss because of the pain. I don't know how I can convince my Dr to put me on some type of a maintenance drug. In the past I was rarely sick or ever had any reasons to be on any type of pain meds. I've been with the same Dr since I was 21. I really don't want to change Dr's but it's hard living with this day in & day out!!!! I really don't believe this is an age thing!!! It's almost an insult to me. I believe it's because the Dr's don't understand this illness & what all happens with it!!! Thanks for listening to me!! You all are the only support I have!!!!

9 Replies

You are but a spring chicken!! Is this with your APS specialist, or your GP? I get my pain meds from my Rheumatologist and generally he gives me 4 months worth to tide me over til next visit. As my needs aren't getting any greater he's happy to leave me with taking them as I need them. Here we get them 1 month at a time and the Pharmacy keeps the prescription as there is tracking on their use.

I can walk most mornings and function fairly well most of the day (except for really cold days) but do flag a bit by 6pm! I am retired but I hate just doing nothing so I'm fairly happy with my regime. It was not all that long ago I would get up, have a cup of coffee and go back to bed :(

Maybe go to your doctors armed with your list of woes and make sure he LISTENS!


Hi Ozchick! Unfortunately we live in USA & we suffer because of the drug addicts that abuse the system! I went to a back doc to get help with pain ! She was fast talker, saw I had surgery saw I was in bad car accident said nothing and wanted me to pre in a cup like a common drug addict! Unfortunately my insurance charges me wen I go outside their labs and was seated with a $500 lab bill so I refused! I was then told I can never get any pain meds cuz I refused to be tested! I replied I don't want pain meds I'm not an addict and all I want is to get a shot and have a doc that actually hears me! I'm not part of ur assembly line! I'd NEVER GO BAK TO HER ANYWAY! I did find one my friend goes to! I went with her and he gave her what I need a shot in her bavk! Also pain meds for one month we are allowed only in USA! Especially in NY AREA! Heavily traveled drug areA!!! We suffer for the sins of others! Very sad!!! Good luck my dear!!! Godspeed


Try going to docs with someone and write down what is hurting n troubling you. He won't be able to fob you off with old age then.

I get the pain in my legs to and it is very painful. Best wishes Diane


Hi I would make an appointment with your Doctor today or another one at your practice if you can and ask to be referred to a ? Rheumatologist or someone who can investigate your pain, difficult to know who from here, could be that you need to see a vascular consultant ? Have you had an X-ray or any other tests

Good luck horrible to be in pain

1 like

Sorry I should have put my brain in gear before replying, be very careful about asking who you can see, Doctors as you probably realise don't like to be told I am not medical so I would just explain that you just can't cope like you have told us already, sorry just going to check my INR


Hi, If I were you I would look for a Specialist who understands what you are talking of. Getting old......!!

Do you have all three antibodies positive for APS? What is your therapeutic level for your INR of Warfarin?

Best wishes from Kerstin in Stockholm


I too am early 50 s. Getting old my a--! Just what we need to hear..... Kudos to you for all that brainwork. An accountant working full time, good for you❣


I felt like this back when I was in my early 50s/late 40s – and my energy returned with a bang when I discovered I was gluten sensitive. in hindsight, I did have many symptoms of celiac, but I had learned to deal with them and so never really considered my issues as symptoms. if you have not already, you might give a gluten-free diet a try.

The connection between constant fatigue and a food allergy is that the constant excitement of the imune system drains energy from the rest of one's body so that one feels as tired as we all feel a day or two before one come downs with the flu or some other bad infection. When the annoying food is illuminated from the diet, the immune system calms down and stops monopolizing all the body's energy.

if your GP is not gung ho with this idea, you might search for a nutritionist in your area. Or try an elimination diet on your own. The usual allergy offenders are gluten, peanuts, tree nuts, soy and dairy.

good luck! Having a food allergy is constantly annoying, but it's so great to mark such a great improvement with your health with just a behavior modification and not an additional prescription in your medicine chest. so, as insensitive as this may sound, I do hope you have a common food allergy and you can identify it.


You need APS socialist! I'm also fro USA! There is also another gal on here near Knoxville, Tennessee who sees a good specialist! What part of Tennysre u from! I go there almost every other year! My favorite place! Nashville! Went to Memphis this time to! There is also a gal on here from Memohis that I am helping locate a docctor for! Private message me if u want! I'll do what I can to help! Don't just shoe away leg pain, no pun intended! Lol... That's how I started with APS at age 24 in the mid 70's b4 APS even discovered! I've been told I've had APS my whole live! I had Juvinile Rheunatoid arthritis and now have RA, Sjogrens APS and a prosthetic leg due to undiagnosed APS! It will b one year of DX in October! I made my older sister get tested and she too has it! Not like me, but preventative! It had taken me 5 doctors to find a good one! I'm kind of good at this am willing to help my Favorite People on earth! My friends from Tennessee! It's good practice for wen I come back to retire ther and love when people younger than me call me Miss Debbie and treated with the utmost respect and beyond POLITE!!! God Bless you my friend and comrad!!!


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