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TOPIC: Mistrust of doctors

Mistrust of doctors 3 years 10 months ago #53461

  • Melinda
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Aoi that's what I would do after each of the thumb basal joint surgeries I had - a small trash bag that went past my elbow, then I'd put a rubber band above the elbow and tape - that way I could take a bath [wasn't about to try a shower] with that arm up in the air hoping no water got to it.

The problem was that my hand, in a cast, would sweat - was afraid sweat would make the cast soft so it was a quick bath. Hair washed in the sink with the surgically repaired hand held up high behind my back as I'm bending over the sink.

Sandi I don't know how you are doing it - bless you! The Nexcare waterproof pads sound great - and they do work?

Can't imagine trying to sleep in that thing - oh my! Glad the Percocet is helping!

Aoi - if she did a video it would go viral ;)

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Mistrust of doctors 3 years 10 months ago #53467

  • Sandi
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Ha, another suggestion! I could put a garbage bag over my head and shoulders. That might do it.

I ordered another collar from Amazon. This one is horrible. I ordered the same one that I had the last time. I can't sleep in this thing.

The Nexcare did work today, but I accidentally put the adhesive on part of the open skin. Ouch. Got it off without too much damage.

The problem was that my hand, in a cast, would sweat - was afraid sweat would make the cast soft so it was a quick bath. Hair washed in the sink with the surgically repaired hand held up high behind my back as I'm bending over the sink.

Sounds like a game of Twister.

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Mistrust of doctors 3 years 10 months ago #53470

  • Aoi
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Sandi, I hope the new collar helps. And please don't try to go viral with a garbage bag over your head as a way to keep your wound site dry. I think we'd miss you here, and that's probably not good PR for ITP or the PDSA.

Seriously though, the problem with water is that it's too wet. There are ways to make water less wet, but they're not suitable for home use. The last time was in a situation like that I simply didn't bathe.

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Mistrust of doctors 3 years 10 months ago #53472

  • Melinda
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Too funny - Twister! But you are right now that I think about it.

Sponge bath better than nothing - but still have to be careful.

Heads up (no pun intended) - with the bag over your head just be sure you don't tie it too tightly.
(that's a joke just in case someone reads this and doesn't realize it - one needs a sense of humor in these cases)

How long do you have to keep things dry? My right hand was in a cast 6 weeks, left hand 8 weeks - think I threw out my shoulders trying to keep hand dry while washing hair ;)

Hope the new collar gets there soon and you sleep well!

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Mistrust of doctors 3 years 10 months ago #53473

  • Sandi
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This is hilarious! Laughing about it is good. Can't take things too seriously.

OMG - water is too wet! I know you were serious, Aoi, but it cracked me up.

The problem is solved as far as I'm concerned. I only have to keep it dry until the steri-strips come off on their own which should be 5 to 9 days after surgery. No stitches. Half-way there.

I am not a sponge bather. I am a full shower wash-and-dry-hair person. Every day. Remember Sada Thompson from the show Family? She was always primped and ready to go. I am always prepared aesthetically even if I know I'm going no where and no one is coming over.

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Mistrust of doctors 3 years 10 months ago #53477

  • EmilyK
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So glad you are home and doing well!
Diagnosed Jan 2015 at age 50 with 13,000.

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Mistrust of doctors 3 years 10 months ago #53483

  • Margaret k
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Glad to hear you are doing well Sandi. I had an ACDF four years ago due to a disc herniation between vertebrae 6& 7 .Here in Aberdeen they don't believe in collars though, they think it weakens the neck muscles. Even after 4 years I still get shoulder pain on the side where the nerve was trapped when I do repetitive work like gardening ,cleaning or keyboarding. It seems that the micro movements of the head neck and arm when keyboarding cause a lot of strain on the nerve to the arm and shoulder so you really should be having a proper rest from your PC or tablet at present , especially as this is your second op.

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Mistrust of doctors 3 years 10 months ago #53484

  • Sandi
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Thanks, Emily!

Margaret - I understand the reasoning behind not using a collar but yikes....no support! As much as I hate the thing, I can't imagine no having it. My head feels way too heavy. I haven't been using the collar in the shower and feel guilty about it but if you didn't wear one at all, I guess half an hour won't hurt.

Did you move your head around? What restrictions did you have? My neck feels really tight on one side and I can't even move it an inch in that direction. I'm a little worried, I don't remember if that is normal. I don't know if it's just muscle or if something is wrong. I wasn't worried at all the last time, but since my nerve/muscle function and balance were affected so much by the compression this time, I'm worried about everything. I was hoping it would all come right back but it didn't.

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Mistrust of doctors 3 years 10 months ago #53486

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The exercise I was told to do by the physiotherapist was just to gently turn my head to look to right and left, a few repetitions, a few times a day to try to build up normal range of movement. When my disc went my main pain was in my right arm and between my shoulder blades, strangely less in my neck. I had really bad tingling in my hand too. You must be careful not to lift anything over about 3 pounds weight and don't bend to unload the washing machine or dryer.

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Mistrust of doctors 3 years 10 months ago #53487

  • Sandi
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After my first surgery, my neck felt great for about 8 months. Then the pain started coming back and kept getting worse. I ignored it thinking it was normal since I'd had neck pain for 18 years. Apparently it wasn't normal because three years later, the compression was so bad I was at risk for paralysis. My point is, if you're having pain, don't assume it's normal. You could have another disk problem since once you have one done, others around it can collapse. I didn't really have nerve pain until a few weeks before this surgery...other symptoms came first and by the time nerve pain showed up, it was very advanced. I should have had it monitored and I will certainly do that from now on. I already know that I will have to have this surgery again. I won't wait until it's destroyed muscle though.

I still have numbness and tingling in my fingers, but that is due to Lupus. Any time my hands get cold or hot, it happens. It is hard to separate Lupus from other physical problems.

I'm not lifting anything. I feel like a turtle...I move so slow.

I'm going to try using my TENS on my neck and see if that loosens that muscle. I feel like my neck is locked up.

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Mistrust of doctors 3 years 10 months ago #53489

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Sandi wrote: I still have numbness and tingling in my fingers, but that is due to Lupus. Any time my hands get cold or hot, it happens. It is hard to separate Lupus from other physical problems.


That's the trick, isn't it? I haven't had a neck surgery yet, but it's probably in my future. Pain and parasthesias are a sure sign of possible trouble, but can be caused by things other than nerve compression in the c-spine. I hope you can find docs who will listen to you. Maybe you should quote William Osler to them. He said something to the effect that listening to a patient is often the best way to make a diagnosis.

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Mistrust of doctors 3 years 10 months ago #53492

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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You want to know what's really frustrating? I usually already have a diagnosis when I go to them in the first place. Nerve compression was my first thought which was why I started with the Neurologist. I knew it was nerve related. He said, no, it's connective tissue and sent me to the hand specialist. I thought, okay, I'm wrong. That doctor said, no, it's nerve and agreed with me and sent me to a physiatrist. That guy shrugged and sent me back to my Neurologist who then changed his story and said it was Lupus nerve inflammation. Be gone! Dead end. All of that took 10 months to wait for appointments and test results. I gave up for a while then decided to go back after it and called my GP. It gets exhausting. She listened. I've since thanked her for that.

I had numbness and parasthesis before I had stenosis, so I know it's a separate issue and it can be hard to distinguish the two, but I knew this was different. When I had shingles, my left hand lost muscle in a matter of hours, two days before the nerve pain and rash showed up. I think my nerves are very sensitive because of Lupus inflammation and anything that affects the nerves is going to cause an over-reaction. It took 5 months but I got 85% of my left hand back then, so maybe it will happen again. I hope so because this has affected my dominant hand more, and also my arms and legs. I'm so glad spring is coming so I can go walking and try to build strength.

I took the collar off for an hour and laid still on the couch with the TENS. Feel better! I'm going to do that once or twice a day. It gets to a point where that collar makes you crazy and you want it off! The TENS probably also helps healing because it will bring blood and oxygen to the site.

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Mistrust of doctors 3 years 10 months ago #53493

  • Aoi
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I went through something similar so I understand your frustration. I had a neurosurgeon ready to cut, but I just wasn't able to accept her explanation that "these things happen" and waited, got a second opinion, more opinions, some testing, and ultimately a proper diagnosis. I'm so pleased with my current primary care physician that I'll probably kidnap her if she decides to move or retire.

My chart reads "pain and parasthesias of extremities," a result of my Ehlers-Danlos and associated issues. It took years to get all that sorted out, so I can only imagine what you have to go through with lupus. I hope you can regain strength and function going forward.

I can't handle collars. Or neckties or even tight shirt collars. I didn't even buy the one that was prescribed back in 2014. But I haven't tried TENS and will probably mention that to my pcp when I see her next Wed. I'm glad to hear it's working well for you.

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Mistrust of doctors 3 years 10 months ago #53495

  • Sandi
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I don't like things around my neck either. Every time I get a hair cut, I have to make them loosen the cover. Part of my fear of being restrained/stuck thing. This collar is pretty loose though so I can tolerate it, but it gets on my nerves. It is restricting.

The TENS loosens tight muscles. It really helps for that. My acupuncture mat also helps a lot. I love when there are alternatives to medication. Any more meds and I'd live in a coma.

I'm glad you found an alternative to surgery. What was the problem? (If you don't mind telling).

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Mistrust of doctors 3 years 10 months ago #53502

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I avoid medication as much as possible, but I still end up taking something most days. I have Ehlers-Danlos, which means my body can't make collagen properly. That causes all sorts of problems with connective tissue, particularly in joints. My neck has been a problem since the mid-1980s, and though the osteophytes and cysts are making matters worse, the underlying issue is what it is, and I just have to live with it. Ehlers-Danlos makes me a poor surgical candidate, so I'm hoping to remain stable long enough for new techniques/technologies to emerge.

Meanwhile, TENS and acupuncture are on my list of things to try this year. There are only so many pain meds out there, and they don't work all that well.

Interesting side note: one of my doctors now thinks that my low platelet count may be due to the Ehlers-Danlos because blood is form of connective tissue. But my other docs disagree, given that collagen synthesis and platelet production are physiologically unrelated (they say).

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Mistrust of doctors 3 years 10 months ago #53533

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I don't know much about Ehlers-Danlos, but it sounds a lot like Lupus (destruction of the body). The decisions are hard to make because you just don't know what will be a benefit and what won't. I try to stick with the older drugs when I can. I am not a fan of most of these newer drugs, mainly biologics.

It can't hurt to try the TENS. It definitely helps when drugs don't work. I take muscle relaxers too and most of the time I don't think they do anything. But there have been times when I didn't get the script filled and I go a few days without it. I realize then how much they really do.

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Mistrust of doctors 3 years 10 months ago #53537

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Ehlers-Danlos is more about faulty construction than active destruction. Also, there are no meds to correct the problem; I get the usual ones for symptom relief, though they don't help so much and often come with annoying side effects. My favorites: the muscle relaxant that causes you to become unable to urinate and the pain reliever that provides an out-of-body experience. I'll see what my docs think of TENS. Maybe that'll prove worthwhile.

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Mistrust of doctors 3 years 10 months ago #53544

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Which meds are those?

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Mistrust of doctors 3 years 10 months ago #53548

  • Margaret k
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TENS can be a distraction to pain Sandi but in my instruction leaflet it said not to place it over metal in the body so maybe best not put right over the site of your titanium pins. I found that low dose amytriptiline , 10-20 mg each night helped with nerve pains. No effect on platelets glad to say.

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Mistrust of doctors 3 years 10 months ago #53549

  • mrsb04
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My mother in law takes Amitryptiline for nerve pain and finds it very effective

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Mistrust of doctors 3 years 10 months ago #53551

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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No more drugs. I take 9 already and always feel drugged. My problem is more muscle than nerve.

I have no idea where the titanium rods are so can't really avoid them. I didn't think titanium counted as a metal since I can still have MRI's and won't set off air port alarms. I could be wrong. I'll ask the doctor if I think of it next time.
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Mistrust of doctors 3 years 10 months ago #53553

  • Melinda
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Sandi I pressed Thank You instead of quick Reply.

But thank you ;)

I didn't think the TENS was to be used on neck or spine. It's been a long time since I've gotten instruction on it or looked at the booklet since it never helped my neuropathy. But I could swear it said no spine.

Margaret the amitriptyline doesn't make you "goofy"? I was offered that for neuropathy and didn't like what I read in side effects so declined.

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Mistrust of doctors 3 years 10 months ago #53554

  • Aoi
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Sandi wrote: Which meds are those?


Opioids and NSAIDs, with an occasional foray into SSRIs, trycyclics, and anticonvulsants. Hope you're feeling better.

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Mistrust of doctors 3 years 10 months ago #53559

  • Sandi
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I don't use the TENS on my spine, but I do use it on my neck on both sides of the spine. I'm careful to stay away from the carotid which is why they dissuade neck use. I also use it on pressure points on upper back.

I don't take any SSRIs, trycyclics, or anticonvulsants. I've tried a few and didn't like them. I do take Opioids, but no out of body experiences here.

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Mistrust of doctors 3 years 10 months ago #53562

  • Margaret k
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The dose for nerve pain is low, only up to 30 mg daily, compared with the dose given for treating depression, so no I don't have any side effects, apart from a bit of a thirst in the morning. Opioids are not very good at helping nerve pain, but they don't affect the platelets the way NSAIDs do.Paracetamol is an effective painreliever for sore muscles if taken on a regular schedule of 3x a day.
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Mistrust of doctors 3 years 10 months ago #53563

  • Sandi
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I don't have a lot of nerve pain. I have parasthesis and occasional pins and needles, but it's not bad enough to take a medication. I had nerve pain when the stenosis got bad, but I thought that was tolerable.

I don't just have sore muscles; it's severe muscle pain. It's that achy feeling like you have the flu, plus the sore 'worked out too hard', plus a painful stiffness all at once. It hurts to breathe and every movement is horrible. I've tried everything. The thing that helps the most are anti-inflammatories, like Prednisone. Norco take the edge off, plus helps joint pain. It took years to find a drug combination that allows me to function a bit. It's one thing to get through days or weeks of pain, and another to get through years or a lifetime of it. I also found that Magnesium helps, so I take that too. Some days, none of it helps at all.

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Mistrust of doctors 3 years 10 months ago #53564

  • Aoi
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The OBE was from a SSRI, not an opioid. I end up using some opioids because I'm allergic to acetaminophen and don't tolerate large quantities of NSAIDs so well. I've also been on gabapentin for peripheral neuropathy, but that was resolved by vitamins D and B12 supplementation.

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Mistrust of doctors 3 years 10 months ago #53566

  • Sandi
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I've also been on gabapentin for peripheral neuropathy, but that was resolved by vitamins D and B12 supplementation.


Funny you said that. Those are exactly the two Vitamins that I have sitting in front of me. I take them every day.

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Mistrust of doctors 3 years 10 months ago #53570

  • Melinda
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I've also been on gabapentin for peripheral neuropathy, but that was resolved by vitamins D and B12 supplementation.

I take B12 supplements and D and my neuropathy just keeps on getting worse - wish mine was cured like yours was! My acupuncturist said some of her patients have told her alpha lipoic acid has helped so I'm taking that now.

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Mistrust of doctors 3 years 10 months ago #53580

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Melinda wrote: I've also been on gabapentin for peripheral neuropathy, but that was resolved by vitamins D and B12 supplementation.

I take B12 supplements and D and my neuropathy just keeps on getting worse - wish mine was cured like yours was! My acupuncturist said some of her patients have told her alpha lipoic acid has helped so I'm taking that now.


Sometimes the fix is simple. I do have some neuropathy due to a connective tissue disorder I have, which is why I have to take a lot of supplements.

@Melinda: Sorry to hear your neuropathy isn't resolving. I hope the ALA helps.

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