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Default Oct 09, 2018 at 12:50 PM
  #1
I have Lupus/Sjogrens and my illness shifts over the years. Now it is back where it was 15 years ago, with pain. And stiffness now as a new fancy thing. Had this new variant a few years now. I do my physio/yoga almost daily and it does help, but some days not enough.

I want to go out walking but after a while I just hurt so bad. It takes the fun out of walking. I hate that I can't walk as much as I want to.

I can if I take pain meds but I'm not allowed anything that really helps. I've never been accused of abusing drugs or anything like that, it is just that docs think I exaggerate my pain because I walk sort of normally even with pain. I more cry on the inside.

As a bit older I was taught as a child to ignore pain so I don't have a good way of showing pain. I guess docs don't understand words?

I'm thinking of buying pain meds illegally. Not saying I'm gonna, but I feel so trapped and I have a lot of physical labor to fix this fall and I can't see how I can manage without pain relief. My doc thinks Tylenol works for everything.

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Default Oct 14, 2018 at 11:09 PM
  #2
Have you tried CBD/Hemp oil. It has helped my arthritis.

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Heart Oct 15, 2018 at 02:36 PM
  #3
Some docs try anti-epileptic drugs for pain: gabapentin, Lyrica, etc. Have you tried those?

I also use a topical, called Penetrex, avail. at Walmart, penetrex.com or Amazon. It is arnica and other ingredients. Has really helped nerve pain in my feet.

Are you able to take NSAIDS, like Aleve (naproxen sodium) or ibuprofen? These can help inflammatory pain.

I am so very sorry you are in pain and feel your doc is not really hearing you!


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Default Oct 15, 2018 at 02:46 PM
  #4
Braces, wraps, supports? Where does it hurt?
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Default Oct 18, 2018 at 07:52 PM
  #5
Back, muscle pain mostly I think, knee joints, toe joints, stiff all over like fingers also.

Hemp oil is illegal, can't tolerate any anti-seizure med but yea I take Naproxen when I really need to. I have to be careful though since my esophagus is very raw and I can't take any stronger antacids.

The yoga and physio still helps the most. I shouldn't complain, people have it worse. I just miss walking, after a while my back starts locking up.

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Default Oct 19, 2018 at 01:10 PM
  #6
Quote:
Originally Posted by -jimi- View Post
Back, muscle pain mostly I think, knee joints, toe joints, stiff all over like fingers also.

Hemp oil is illegal, can't tolerate any anti-seizure med but yea I take Naproxen when I really need to. I have to be careful though since my esophagus is very raw and I can't take any stronger antacids.

The yoga and physio still helps the most. I shouldn't complain, people have it worse. I just miss walking, after a while my back starts locking up.
I remember talking to you on the food threads here a lot, so i looked back there to see what you were doing now, because my first instinct was to ask what your diet was. Have you tried cutting out the milk? I pretty much have, and i think im feeling better. I do try to have two servings of veg per day, and two of fruit. The rest is tuna and candy. J/k, i wish! But pretty close!
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Default Oct 21, 2018 at 04:08 PM
  #7
Yup, I tried living gluten and dairy free for several months. Nothing happened. I eat a lot of vegetables.

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Default Oct 26, 2018 at 11:33 AM
  #8
I was out walking when I got stiff. It usually happens in the morning after lying down or after long walks. I found a bench and I did my yoga/physio, the fast acting stuff. A guy came and looked at me strangely.

LMAO! But I am thankful for that bench. In the summer one can lie in the grass.

I think if I had worn sportswear it would have been fine but I dress skater style, very city slacker oriented.

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Default Oct 26, 2018 at 01:10 PM
  #9
Have you tried any natural remedies? Circumin (nutmeg extract) is effective for some conditions. I have taken it for arthritis pain and it does reduce pain, and inflammation which often is associated with joint issues. I've also recently discovered the benefits of pineapple. Do some research. After all, natural medicines were used way before man made drugs.

PM me if I can help. I've researched a lot of these things.

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Default Oct 26, 2018 at 02:37 PM
  #10
I used to be a "witch" but these days there are even more remedies.

I have tried a few and a few not. I got my hands on some emergency Tramadol. Feels good because then I can use them worst case. I don't use strong meds on a regular basis but it feels safe to have in case I promised to help with something one day and that day just happens to be a bad pain day.

So I am a little bit happier now.

I was gonna do ant therapy this summer but the ants had a hard time, we had a very weird summer, so I didn't wanna disturb them

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Default Oct 27, 2018 at 09:14 AM
  #11
I am furious at the medical community for riding this trend of not prescribing pain meds. They tell us to walk, to lose weight, blah, blah - but how are people in chronic pain supposed to do anything except mild stretches or very low-impact yoga? It's sick that so many people with chronic pain are ignored.
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Default Nov 02, 2018 at 10:49 PM
  #12
I read this ridiculous article that was going to stop your pain. You were to cut down on red meat, fine, can do that. And to the rest of your regular food (no snacks and the sorts) JUST add 10 servings of fruit and veg, and it cannot be juiced.

Every day? Yeh sure, between meals I'll just eat my 10 apples and I will chew all day long. Talk about sore jaw from that. I could switch some of my food for veg, but it would be endless chomping anyway.

They could as well told me to eat 10 watermelons. I eat a lot of veg as it is but I don't reach more than max 4 servings often less a day, even if all my food is veg.

How much do they think my tummy can hold???

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Default Nov 12, 2018 at 07:52 AM
  #13
Are you in a position where you can find another doctor? You know, one who might listen?
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Default Mar 08, 2019 at 01:22 PM
  #14
I actually realized WHY I have pain. Almost half of Lupus sufferers are hypermobile. Hypermobility is also connected with autism and anxiety. Might sound weird, but there are studies proving this.

Am I hypermobile, oh heck yes. Not freakishly so, but I definitely fill all the criteria for hypermobility disorder. I've looked up exercises to actually strengthen muscle to stabilize all those loose joints but it is hard to find something that seems valid.

I remember being a kid and being yelled at to sit up straight. Trying to do so, I just felt extremely drained after a while. They just thought I was lazy and people showed me how easy it was to sit up straight, still i failed. Back then everything was about willpower, there was never anything different about anyone so, even if someone had been kinder they wouldn't know how to help.

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