Hello everyone, I have not written a note on the forum in quite sometime. I am reaching out today hoping to find some further connections into a solution for joint and pain support. A month ago, my Rheumatologist increased my dose of Plaquinil for the joints. The pain levels, fatigue are common with each day. They said, they are keeping their eye on me due to the increase of symptoms, they believe Inward Lupus is creeping in. I'm doing all I know to do with their help. I have cut gluten out of my diet, my diet is clean and healthy, the weight still manages to stick around. I have gained 50 lbs since the DVT and PE three years ago. Had two surgeries in the last two years, one was a full hysterectomy. I am 47 years old and know things are changing yet I have not one day in my life struggled with weight. The pain in my joints has been changing lately, the joints jerk my arms and legs often. I lay in bed with jerking limbs most often. Like spasms. The pain waves are like someone is sending a hot shot through me, then it rests then it goes again. My feet struggle so badly since the DVTs. I must wear ergonomics daily, no longer barefoot or flip flops for me. There has to be support or I simply can't walk, I use my cane often when my legs dont want to work. I feel like a kinked hose. My fluid intake is regimented. I'm keeping excellent care of myself and juggling my INR's to a stable 3.5 range but the Plaquinil moves my INR up and down, yet I self monitor the Warfarin with my machine and adjust my diet to pull the INR to the 3.5 range as I feel best in that range. I do not have headaches as bad anymore as long as I stay clearly hydrated. It's a daily discipline to maintain what I can. I do not take pain meds, the doctors insist most often that I should yet I do not abide by them, I truly believe it masks what is going on and I am longing to find a solution instead. IS there one? How does everyone deal with the joints, muscles, fatigue?
What is T3? Is that something over the counter? I hear much about it?
Thanks for insight...nice to know I am not alone
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beccafullcircle
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You write about "T3". I have in September taken a bloodsample S-T3 (Trijodtyronin). I guess it has to do with the Thyroidpanel. I also took S-TSH, S-T4.
Stay on here as I am sure you will have some very good answers from other members.
I know very little about pain.
I wish you a Happy New 2016 with less pain! Bless you Becca!
Hello my friend, so good to hear from you. Thanks for your support once again. Yes, I hit another deep wave of barrier. We also moved to the valley to better help my lungs in the more moist air. That decision has been a good one. We are closer to OHSU now also and have new appointments scheduled as they have said something is progressing that they can not detect as of yet. We will remain proactive for sure!!!!
The weight is baffling, I know many say I am ok yet I am not myself. So much is inflammation, I look puffy often. I swell up and it acts as weight I believe. Very frustrating. God is no doubt dealing with my vanity lol.
One step at a time, the pain is crazy heavy some days. I just refuse the pain meds. I see too many on them when there are other methods including breathing through the pain waves and eating right. It's hard though to walk when I am all kinked up. I remember someone on the forum explaining it felt like a "kinked garden hose" I concur .....
Hi as you are in the states, is is far more easy to get hold of Natural Desiccated Thyroid, if you have Hypo Thyroidism, however you need to make sure that beyond the TSH test that most doctors do, that you also test your T3, your Reverse T3 also Free T4, also your Thyroid antibodies. Also your cortisol levels. On top of this your Ferritin and Folate, if you iron is low, your thyroid struggles to uptake any form of Thyroxine. Also vital to keep your vitamin D up to scratch as otherwise more inflammation, and on top of this also your B12. Synthetic medication such as Levothyroxine or Synthroid in the USA does no open for everybody. It is frustrating that many doctors will only test the TSH which is why so many patients settle for a diagnosis of 'Fibro' which is a shame as an underactive thyroid not treated will lead to terrible health. I hope you get on ok. The best site for help in the USA is Mary Shomon who's site would guide you to a medical doctor who could help, but also make sure they work with your current consultant.
Nice to hear from you.
ps I am on Natural Desiccated Thyroid, and have done all of the above.
So did they do all the tests above or just the TSH? as that is not reliable! My TSH showed nothing for years but actually I did have a Thyroid problem. Here is the list of symptoms: thyroiduk.org.uk/tuk/about_... MaryF
Thank you Mary, you are always so helpful. I will double check on all these details as there may be something missed for sure. I have so many of the symptoms. Thank you so much, I will get back to you on this. I have the workup of my last blood draws. Will see
I wish I had some practical and substantive advice to offer. I don't. You seem too have crossed all the diet "t's" and dotted all the behavior "i's". But I do wish you the best and hope you r ach doiagniatic vnirvana so on.
Dear Becca, we cud be twins as far as our symptoms go! I was DX'd with APS on October 4th, 2015! By The way where in US DO YOU LIVE? If it wasn't for this site I may not be talking to you now!!! I live a half an hour from NYC, on LONG ISLAND! Unfortunately NYC AT HOSPITAL FOR SPECIAL SURGERY HAS THE BIGGEST CLINICAL SERVICE IN WHOLE USA! ITS HEADED BY A RHEUMOTOLOGIST BY NAME OF DR. DORUK EKRAM ( not sure this moment of correct spelling, as I have mental block with his name) He has his own website or blog that if u ask a particular question he will answer, he give a phone number also! He is a researcher of APS AND HAS BEEN A PIONER IN IT AND IS TRYING IN USA TO LEAD THE WAY TO GET A NATIONWIDE PROTOCALL FOR THIS HORRIBLE DISEASE! He says if the USA DONT COMPLY AND GET THIS PROTOCAL SET IN PLACE NO ONE HERE WILL KNOW HOW TO TREAT APS!!! Other than the few specialists there are! I don't recall if I have said much as of late on this site, but I Did see a Dr. Caroline Cromwell associated with Mt. SINAI HOSP, NYC! She came highly recommended from I think Gina from this site! Forgive me if I'm wrong, but my memory failing everyday and wen I talk in opposites I'm yelled at by all, cuz the word just come out wron, they say they know Wat I meant but still point it out that I WAS WRONG! It just substatiates the fact that I'm loosing my memory! I'm sorry I go off on a tangent sometimes! This is about ur pain not mine! I feel ur pain and if I can be of any help to you about NYCITY DOCTORS PLEASE FEEL FREE TO ASK ME OR MY BIG SISTER NANNY 23! She has kindly joined this site to be my eyes and ears about Hosp For Special Surgery! She's a great researcher, as I have too much pain and not enuf energy to do it myself! God Bless You Becca and I just love your name! If my son had been a girl I'd have named him REBECCA LYNN, THE LYNN AFTER MY BIG SIS! BTW IM 62 and lost my leg to APS & hopefully the docs aren't waiting again so I can loose my right leg! Lost it Jan 7 2015 then DX'd months later with CAPS/ catastrophic APS! So rare no research is done! Godspeed!
Hi. It's Doruk Erkan at HSS. I live in Manhattan and was dx with APS in March 2014 after a stroke. My rheumatologist is at Columbia Presbyterian, but I feel my APS has progressed because I have flares with extensive, horrible pain and need to know what's happening to my body. I'm thinking of making an appointment with Dr. Erkan.
Regarding the spasms and involuntary movements, maybe a trial of daily Fragmin shots instead of Warfarin ? Maybe the Warfarin is not as effective as it should be. Changing to another anticoagulant could take awhile to see if it is working whereas Fragmin is pretty quick (days) for the result. That was my case.
Several years ago I was writhing and jerking uncontrollable in ER, couldn't communicate, blurry vision and now looking back I was having a TIA; they missed it. The ER doctor was actually yelling at me because I wouldn't tell him what was wrong, I couldn't talk. Another doctor came into my suite and had the other doctor leave because of it. I was not dx at the time. I wasn't on a blood thinner at the time… so that indirectly leads me back to the above paragraph… I wasn't adaqutely being treated (in my case at all) maybe Fragmin could possibly be worth a try. (Also not saying you're having TIA's).
Although your thyroid tests appear to be normal that you recall, so were mine. However I'm not sure a regular MD is the right person all the time. I went to a ND and was dx immediately off clinical signs; Hypothyroid. I don't think (speculation) medical doctors are as in tune with the thyroid as well as UK doctors, maybe I'm wrong. I told my primary doctor I was sure I was hypo and he ran all the tests and said nope your good. Even my hema/onc told me that I should go back to our ND for that. She didn't run the tests she knew it off clinical signs which I even shared with the primary. Summary, if you are a negative test result, but positive on clinical signs you might consider seeing an ND that is well trained treating thyroid issues as they're more likely to listen and spend more time with you.
How does everyone deal with the joints, muscles, fatigue?
I take plaquenil at bedtime as I have found I tire out more easily right after taking it.
I take hot baths with epsom salt for back, muscle spasms, body aches and pains.
I use voltaren topical cream. It's like putting Ibuprofen on the spot. Expensive.
I periodically use a tens unit.
I use music as a therapy for pain…Youtube, learn a new song on guitar = distraction.
I can ride a bike a lot of miles with no pain. I can't sit for long. Breathing fresh air helps.
I use a fentanyl patch for pain and Hydrocodone-Acetaminophen for break through pain. It helps a lot. It allows me to be more mobile as opposed to clamming up. My body aches all over, my hands hurt, it hurts to open a bottled water, my ears ring like crazy and swoosh or like a vibration, nausea and pain are terrible daily. What keeps me going? I'm thankful as I know there is always someone worse off than me.
I try to put the pain on the back burner. The narcotics allow me to do this. You just have to respect them and never forget what they are. I recently titrated off the fentanyl from a very strong dose. I did this because I'll be going to a pain specialist for the 3rd time and I must seem them when pain is not masked. I didn't make it long without, not because I was hooked, but because it worked so well. I realized life was going to be absolutely miserable. I realized I could better serve my family if I had my pain under control; so to me it's worth it. The fentanyl patch for me did not make me high and that is perfect. It allowed me to carry on throughout the day.
Chiropractic care for alignment of the spine? Might help to have a few treatments.
The biggest things I learned attending pain centers:
1) The glass of water is half full or half empty (George Carlin said the glass is too big).
2) Pain can take your life over or you can do your best to control it.
3) Pacing. In my last year of working, I would type for an hour then take a break and lie down at work for 20 minutes (back pain and spasms). Then work for 30-40 minutes lie down again…… work 15 minutes lie down again. on and on that was my day. I had to pace myself in all that I do.
4) Try placing the pain on the "back burner" not giving it a lot of attention. I really have to think about where I hurt. I've been able to say to myself it hurts somewhere down there.. as opposed to my right big toe, bottom of foot is burning along with numbness, outside left shin, behind kneecap on back of leg, left butt-cheek…., right butt-cheek, right heel pain, right outer edge of right foot.
5) With all of the above said, it doesn't always work, but I do my best.
Fatigue? Pace yourself. I get it too, pretty bad.
Sometimes there is no solution to our aches and pains. I do know I go through flares with the APS. Just got to ride the wave.
I hope some of the above might stimulate some thoughts for you and your doctor to discuss.
I'm with you-stay away from pain meds. I've found soaking in Epsom salts helps some. Also, Gabapentin is a life saver for the neuropathy you describe. I'd be a mess without it. Another thing is Voltaren cream. Rub it on the places you hurt-then apply heat-alternating w cold. It confuses the nerve signals. My heart goes out to you! I hope this works for you. It took me a few years to figure it out. There is nothing better than finally feeling relief and getting comfortable. And people around you don't understand how real this is. Best wishes-Lori
Oh,I forgot something you might think is silly but get yourself a beautiful warm blanket and super fluffy pillows. Spray them w a scent that makes you think of your childhood home. This is your safe place. A place you can go and beat the pain. No one else can be in that place. This is your safe place where you kick the hell out of the pain and you win!
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