My symptoms, so far

Symptoms and Treatments
1

I get occasional dry eye, the dry mouth seems to be ok for the moment. Dental hygiene and lots of water and Biotene seem to be helping. But there are times I wake up with a totally dried out mouth.

I get horrific stabbing pains in both my thighs. Feels like someone is ticking hot pins into my thighs and my thighs are numb at the same time. I have woken up yelling from this pain more than once. It comes on every now and then. But has lessened with the Tramadol/Acetamedophine (Ultracet) the doctor has put me on for the joint pain.

I do not have ANY RA indicators. But I do get swelling knees, despite the bilateral knee replacements. I get horrid hip pain. In both hips, but mainly the left. I do have arthritis in my left hip, but it is minimal. I also have arthritis in my lower back.

Without the Ultracet, I wouldn't be able to get around much. I walk when I can, but there is always a flare up later on in the day or the next day, when I do exercise. But I know I have to keep moving, so I take my extra Tylenol and keep moving.

I don't eat Gluten, white flour, pasta, rice (although I am gonna ask about brown rice) peas, potatoes (though sometimes I can't resist fries). Because they spike my insulin and I crash with hypoglycemia.

So low low carbs for me. Sure I cheat and I suffer sometimes. Usually just with gas etc. But since I stopped my morning oatmeal or Gluten free toast, the crashes have stopped. I've added more fruit and veggies and protein.

I can do dairy, but I'm lactose intolerant. So I drink almond milk. I can do cheese, and yogurt and cottage cheese and sour cream.

So there are some recipes I can still play around with, except no soy, which bothers me also.

Fatigue is a biggie. I can be ok for a long time. Ready to exercise or visit my mom and then I bottom out and am exhausted and have to go lay down. Naps are essential nowadays.

That's about it.

2

Roulette, sorry to hear you are dealing with all of that. I don't know if it helps but a lot of us deal with those things. They can be frustrating. Some times keeping a symptom diary can help bring out patterns that will help further manage them. Do what you need to do for you, always. Please keep us posted on how you are! Sending hugs.

3

Hi Roulette,

I can surely relate to the hip pain, I guess that will be my next MRI. Lower back pain is also a big one with me. It's difficult to find a comfortable way to sit or lie down.

I certainly hope that you can soon get to a better place with everything. My heart goes out to you!

4

BTW, I think we all cave in for good french fries!

5

So True!!! LOL

6

I have also had DEEP pelvic pain which would awaken me in the middle of the night. I tried taking glucosamine chondroitin 2 with every meal. It takes about 3-4 weeks to start working but it had dramatically reduced the pain. I rarely wake up with that pain any more. I also take fish oil 1200 mg three times a day. My rheumy told me it is a good anti-inflammatory. It seems to help some.

So sorry your symptoms are so extreme. I am learning to live with the fatigue although it has improved somewhat in the past 2 years.. For me getting a good night's sleep means 8-10 hours and often a nap in the day. This has become a necessity for me. Are you also having sleep issues aside from the pain?

7

Hi Snowflake,

Thanks on the heads up on the glu/chon, I had started taking them a while back, and didn't notice a difference, but perhaps I did not give it long enough. I think I'll go dig it out, and try again! My best friend had trouble with her knees for years and takes that and shark cartilage, but that may be a different deal than the hip.

8

It just occurred to me too, I have had pretty intense pain in the hips too. It does cycle between a little better or a little worse but always present. A sonogram turned up bursitis in the hips (I wish I'd had them look at my shoulder as it has been bad since my mid-20s.) They did tell me that being fluid filled sacs its not a surprise they were inflamed being as I have SS.

I can't take glu/chon blends because of a severe seafood and shellfish allergy but I hear tons of people swear by it and even vets prescribe it for animals now. I am doing yoga now and I have to say its pretty amazing. I have a good instructor that understands autoimmune so I'm never pushed too far but work hard enough to make a difference. Great to know there are things out there that really help.

9

I've been considering Tai-Chi. I use to do some Yoga, but am a bit afraid now that I find that when I exercise, I pay for it later with more break-thru pain. So, I think Tai-Chi would be easier on my joints and the slow movements a bit easier, just need to get into a class.

I had my first day without the Ultraset (Tramadol/Tylenol) yesterday. Went shopping and was in incredible pain last night, all I could do was rub in Two Goats and take Tylenol.

Thing is, my left hip has a little arthritis, while my right hip is clear. But it was my right hip that was giving me hell.

I know that the worse thing is to NOT move, so once I get past this thyroid thing, I will seek out Tai-Chi and try to get into a class.

As for my sleep, I get about 6 hours a night, but I know I need a nap during the day. Sometimes I do take an hours nap and sometimes I take two naps a day. Depending upon the time I get up. I'm an early riser.

I take Doxepin for sleep. It's an antidepressant, but its used for insomnia. I take it before bed, a low dosage, because it's being used for sleep. Works great, it was the only thing that worked and I found it on some page for insomnia. It's an old time med, so most doctors turn for the pills made for sleeping, but they didn't work for me.

I have no side effects from Doxepin.

10

You said you don’t have any RA indicators. But first off, there is such a thing as seronegative arthritis, and autoimmune diseases and osteoarthritis are treated by rheumatologists. I would strongly encourage you to find a rheumatologist who can work with you.

Honestly, I’m a bit alarmed that you said that you have had bilateral knee replacements, and ongoing hip pain, swelling of your knees, and you are not under a rheumy’so care. It is so important to be properly treated in order to minimize damage. Please get a second or even third opinion. Since you are close enough to NYC you could even go to one of the major medical centers. I’ve heard really great things about NY Presbyterian.

11

That is great advice. The RA doctor I went to just dismissed me because the bloodwork didn't show RA indicators. He just told my primary, she has arthritis and left it at that. I really didn't like him, so I'm glad I won't have to deal with him. But after the thyroid surgery, I will pursue the other issues you discussed. Thank you so much for your advice.

12

does doxepin have asprin in it, i ask because i am on warfin and cant have asprin

Roulette67 said:

I've been considering Tai-Chi. I use to do some Yoga, but am a bit afraid now that I find that when I exercise, I pay for it later with more break-thru pain. So, I think Tai-Chi would be easier on my joints and the slow movements a bit easier, just need to get into a class.

I had my first day without the Ultraset (Tramadol/Tylenol) yesterday. Went shopping and was in incredible pain last night, all I could do was rub in Two Goats and take Tylenol.

Thing is, my left hip has a little arthritis, while my right hip is clear. But it was my right hip that was giving me hell.

I know that the worse thing is to NOT move, so once I get past this thyroid thing, I will seek out Tai-Chi and try to get into a class.

As for my sleep, I get about 6 hours a night, but I know I need a nap during the day. Sometimes I do take an hours nap and sometimes I take two naps a day. Depending upon the time I get up. I'm an early riser.

I take Doxepin for sleep. It's an antidepressant, but its used for insomnia. I take it before bed, a low dosage, because it's being used for sleep. Works great, it was the only thing that worked and I found it on some page for insomnia. It's an old time med, so most doctors turn for the pills made for sleeping, but they didn't work for me.

I have no side effects from Doxepin.

13

Doxepin is an anti-depressant and is also used for insomnia. Which is what I use it for, and I'm unable to take aspirin too, because I'm allergic to it, so no, it doesn't have aspirin in it.

http://www.drugs.com/search.php?searchterm=doxepin