Finally the nerve to speak up - feel very alone with APS until now

Hi.

For about 3 or 4 years I had been feeling tired. When I turned 40 (42 now) I assumed it was my age until last year on a trip to San Francisco that I kept making excuses to take breaks from walking. I was always very active prior to that trip. Four years ago I asked my GP to check my thyroid because my mother has hypothyroidism but he did just one basic screening and said I was a low but normal - that maybe i wasn't sleeping well.

We know our bodies, i knew something was wrong.

I am very needle-phobic, yet on my trip I was in such pain in my hands (i was dropping things for weeks by then) I ended up searching for a chinese doctor and had acupuncture. When he held my wrist he asked if my low pulse was normal for me, if not I needed to see my GP when I get home.

(sorry such a long post)

I decided to see an endocrinologist who found a goiter on my right thyroid that I had a biopsy and was fine. Then blood work showed very low vitamin D and of course thyroid antibodies which led to now taking thyroid meds. I immediately felt better after a couple of weeks but....

the pain in my hands and feet came back with a vengeance. I was sent to a rheumatologist who determined I did not have RA but ran more blood work. On my return for results (March 2012) the Nurse Practitioner saw me instead and advised me I had "mild" APS that 81mg of aspirin should take care of it and to take Naproxin for any pain. She didn't seem concerned at all and made light of it.

Well here I am 5 months later with a lot of pain and can't help but feel alone here. Everyone around me sees me healthy on the outside so it is hard for them to imagine the physical pain and emotional pain I am in. Typing this hurts my fingers.

I am glad I found this site - I only wish I had sooner.

Does anyone else have these pains where at the end of the day your feet and ankles hurt, and your hands/fingers hurt? My fingers get extremely painful doing anything for a few minutes - like blow drying my hair to give an example.

Could it be I have something else too? They already ruled out Lupus and Rheumatoid Arthritis.

Thanks for listening....I feel better knowing I have just let it all out to others who will truly understand me.

22 Replies

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  • Hello, APS is APS doesn't matter if they say its mild on test results. It still has all of the same symptoms. I was initially put on asprin when diagnosed and it did nothing to stop the pain, I had to beg for more meds. Reluctantly put on plaquinel but still no real releif. I had a really bad turn and was bed ridden with pain and I couldn't breath very well, my husband rang prof hughes at his private clinic and he told him I had to get my gp to perscribe clexane immediatley after that I got better. Blood thinners was the real turning point for me, t has made everything more manageable. I have since been perscribed more meds to help pain and fatigue as I am now under a specialist at st thomas hospital. My husband had to fight to get me help and we even went private at one point to get the ball rolling. I think you need to try and get refered to a specialist or ask your gp to look into plaqinel or blood thinners it may really help you. I hope you can get this sorted and start to feel better soon x

  • Hello there and a big welcome to you. Firstly you will not feel so alone, now you have found us all on here, and in fact many from the USA are on here, and you may find somebody not to far away from you geographically speaking. People will see this and come on under here and introduce themselves. I am glad that a diagnosis has shown up, in some ways quite detailed.

    You may need, after meeting people on here to go and actually see a specialist in APS, people on here, will, from their own personal experience - guide you to the right person, nearest you. Also the vitamin D connection... good you have started on this, and it takes a few months to come up to the right levels.

    Re you thyroid issues.. this will also take time... and it can affect your peripheral nerves if left untreated. Untreated thyroid issues make you feel very ill. So your diagnosis is good, in that they have found these things... and now things should improve for you. I hope things can improve for you over the next few months. An untreated thryoid condition which is very common with APS will make you feel devastated with tiredness. Let me know if you need any more information.

    ; I think also a specialist with the correct knowledge of APS may decide you need further drugs for your APS rather than just aspirin, personally I only have aspirin twice a day, but I am in a minority, and also that may change for myself.

    Kind Regards

    Mary F x

  • Thank you, Mary. I do hope I can find someone near me. You've given me hope too :)

  • Hi miamigirl

    Welcome to this very friendly, loving and supportive community.

    You are not alone here and we all have our stories to tell and support that we need and support that we give.

    Best wishes.

    Dave xx

  • Hello, Gina from West Virginia here. Glad you found us. I was diagnosed with APS in 2001. My variety of pain involves my hip and sciatic nerve. The local orthopod is convinced I need a hip replacement, though he once conceded, reluctantly, that the sciatic involvement was probably not caused by osteoarthritis and may not improve after hip replacement surgery. When I tried to ask another question he was already out of the room.

    Sigh.

    So I went down to Duke which is regarded as the Eastern US place to go for APS. The rheumy there, who does NOT think my MRI is suggestive of enough joint deterioration to warrant a replacement, ran a bunch of blood tests and referred me to a Duke orthopod, who I will be seeing on Tuesday.( I get to drive on Labor Day. Joy.).

    The blood work is posted to my Duke Health Portal account which i can view on line. It involves highly technical tests whose significance is way beyond my comprehension. I presume when all the results are in there will be an email or a phone call or another appointment to explain the results.

    So as you see, I am in mid process with them. But the rheumy did listen to me and assured me they could and would reach a meaningful diagnosis. I am encouraged that I am not being dismissed as a hypochondriacal woose, and that their knowledge of immune dysfunction exceeds ( greatly) mine.

    Duke is only a 5 hour drive for me -- I'm sure the travel investment is much higher from Miami. But if your frustration with FL docs continues, you might explore that option.

    ( but Miami is not WV. I would hope there is someone down there who is knowledgable about APS.)

    Gina

  • Oh! A follow up. A diagnosis is usually confirmed by 2positive blood tests some weeks apart. Have you had 2positives?

  • Hi Gina.

    Thank you so much for sharing and your suggestions. I have tried looking up information on line looking for docs in my area but I haven't found anything. I think the closest was in Tampa or Gainsville both a few hours away but if that's what I need to do if no one else is around than I will.

    As for 2 tests, I have had so much blood work I am not sure. I do recall the first did determine the ANA which led to the second tests that determined APS.

    I called 2 days ago telling them about the on going pain worsening and they told me to see a neurologist. Never associating it to APS which leads me to believe they are not too familiar with it and it's symptoms. I am supposed to check for MS - ? But I read somewhere that APS mimics MS symptoms or the other way around.

    I get so confused trying to find info.

  • Wow!!! I went to bed shortly after writing in and I woke up to your wonderful and encouraging comments.

    I just wanted to say how grateful I am to have found you all. I look forward to sharing our stories with each other.

    I feel so much better emotionally this morning - words can't begin to explain this feeling.

    Thank you for being here and so welcoming and accessible.

  • Another suggestion-- when my diagnostic odyssey was at its ( hopefully) lowest point I was in great amounts of increasing pain( 150-175%) childbirth pain, I was practically begging for an MRI or X Ray of my lower spine to rule out( or in) disc problems and ankylosing spondalytis. The rheumy's office told me my insurance co would not pre cert those procedures.

    So one day I chose to call the insurance company and rant. Their responce can best be described as . . . " Say what???!!!". Turns out that not only did they claim to have no record of the request, they , after looking over my notes, wished I had had these tests a year previou, as "it's cheaper for us to identify these issues sooner, and, of course, better for you as well."

    So they asked if I would like an insurance company case manager. I practically yelled " yes, please!". And this nurse case manager has been wonderful! At least for now what is cheaper for them is better care for me. and she has offered a lot of sound advice, and, improbably enough, was the first person in my ineffectual arsenal of providers to lend a sympathetic ear and tell me I'm not crazy. That I'm not making this stuff up. And that she would help me find a diagnosis and a management plan.

    THE INSURANCE COMPANY???!!!

    Maybe your plan offers the same perk? My nurse case manager is through InfoMed, who subcontracts through Care Mark Blue Shield.

    Gina

  • Thanks. I am going to look into it ASAP. I am curious, I need to fly out to DC next week. Do I need to worry about flying? Sorry. I am clueless on any limitations.

  • Sitting all cramped up on a plane increases likelihood of clots. Is it possible at this late date to get a note from a doc saying you have APS and then use the note to prompt the air line into giving you a bulkhead seat? If not, then tell the stewardesses about your condition, ( so they wont misconstrue your actions.) and then try and walk about from time to time. Drink lots of water, avoid alcohol and lots of caffeine on the flight, and wear clothes and shoes that are not restrictive.

    I once crossed the Atlantic laying on the floor beside the bathroom in the back with my feet propped up over my head.( the airline had lost my request and reason for a bulkhead seat.).

    But Miami to DC shouldnt be a long flight. Stretch those legs as much as you can and you should be all right.

    Let us know.

    Gina

  • Hi Miami:

    You can buy a pair of therapeutic stockings which look like regular trouser stockings but are really the white hospital stockings in disguise. They are especially tight and that is supposed to prevent stroke while flying or any long term lack of movement in your legs. Long drives, train rides, long work commutes. If you have a job you just sit at. Try to move your legs as much as is possible for the situation at hand. Get up, walk about, shift your weight, bend you're body and stretch to the ceiling. Yes, you'll probably start a new line dance on the plane but it works. And since you have APS, it's just a good habit to get into to get up every 1/2 hr or so and exercise a little bit. Work it into your day. Every time I go to the kitchen sink I do a set of 10 backbends holding onto the sink. When I use the bathroom I do another exercise for my neck using that sink to hold on to. You'd be surprised how much you use those places in a day. Pick your places and begin. It prevents your pain from getting worse and keeps your muscles limber throughout the day. It's the sedentary positions that really cause pain. Even if it hurts the first few times, it doesn't by the end.1 set of 10 backbends takes less than 3 min.

    Also, I remember one of the symptoms of my Fibromyalgia was the inability to hold a hair dryer over my head long enough to dry my hair without pain. Any amount of arms over my head hurts. All across my back hurt as well, constant, nagging pain. You might firstly, look up fibromyalgia in google because if they didn't know about aps, you may have to educate them about Fibromyalgia. Print it out and bring it with to your next appointment. Don't be too quick to jump to a pain killer. Exercise works best. Even typing may hurt at first, but you are exercising your fingers!

    1. Start a pain journal. Rate your pain on a scale of 1-10. Keep track of your meds in it,; any new meds, dropping meds, reactions from new meds. Keep track of your symptoms in it, keep track and rate your mood of the day on a scale of 1-10. Any new bumps, rashes, strangeness take a photo of and time date it. Rant in it. Do this daily. When the doctor says was the pain better six weeks ago? You will not have to guess. You will have it documented. When he asks what did your rash look like a week ago? You'll have a picture worth 1000 words! When they ask have you experienced this before? You will KNOW. No guessing and no fooling yourself or them. This is your one, PRIVATE, totally honest place.

    2. Keep a list of useful pathways for medical information:

    APSFA.org is America's. I do not find it as friendly as I do the UK's, but it is informational.

    MedlinePlus.com Keep building on this.

    autoimmunity-bible.com

    Here is a start. This will provide hours and hours of late night reading.

    You've found the right place! I've met some very educated people on this site. And very kind as well. There is a commradery here that is quite unique. I have found much comfort here, just knowing I'm not crazy, lazy or stupid.

    Best wishes for a better tomorrow for you, Miami and nic eto meet you!!!

    CanaryDiamond

  • Hi CanaryDiamond.

    I just wanted to thank you for your suggestions. I had a bad week/weekend and began my journal. I had a bad migraine last night that terrified me because I rarely get headaches much less that bad. I was afraid to fall asleep. Anyways, just wanted to say thanks :)

  • Hi Miamigirl,

    I am a former South Florida 'girl', and after several wrong doctors, I did find the very best at University of Miami. There are some excellent doctors in their hemotology/oncology department who specialize in Hemostasis and thrombosis and all the other "sises" that cause our problems.

    I also made the trip to Duke to confirm my APS diagnosis, and I feel that it was worthwhile.

    I now live in North Florida and I'm managing as a result a few decent doctors and mostly because I have learned whatever I could about my disease and am involved in my care and try to be as knowledgeable as I can. By the way, I was diagnosed in 1985 when I was 53 -- you do the math, I am OLD.

    Good luck in finding proper care.

    Gammybunny

  • Hi Gammybunny.

    Thank you for the insight. I will try to find a doctor on UMs website. You are the second person I hear from that took the trip to Duke. If I cannot find a doctor here in UM I would like to consider going to Duke. Can you tell me the doctors name at Duke?

    Thanks again.

  • The doctor in charge of the department at Duke is James Ortel. My wonderful doctor at UofM was Eric Lian.

  • Sorry, that should have been Thomas Ortel (not James)

    Bunny

  • Hi Bunny.

    I was able to find out that Dr Lian retired but his research partner is still in practice Dr. Ahn in the same UofM office and I managed to get an appt for Nov 1 st. For now I will be seeing a neurologist next week.

    Thank you for helping me find a doctor. I will definately let others who may need one in Miami know about him after I see him.

    Hope you are having a nice day/week.

    -Hilda

  • Hi Hilda,

    I remember Dr. Ahn from when I used to go to that office. He is certainly a well-respected knowledgeable doctor, and I hope that he will be able to help you. I would like to keep in touch with you to know how you are doing, and if I might be able to answer any questions for you, but I don't know how to give you my email address privately. Do you know?

    I wish you the best of good luck with finding the right doctor and getting proper care.

    Bunny

  • Thanks again. I haven't had any luck finding a doctor knowledgable with APS. You've been a wonderful help. I can't express enough how happy I am finding this support group. I was so lost and confused.

    Hilda

  • I remember feeling the same as you, so grateful to find this site and the warmth from other sufferers..welcome x

  • Hi,

    I wondered how you were doing so I just read your blog. I think you are headed in the right direction, and I certainly hope you are feeling better knowing what you are doing is taking you forward. Bunny

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