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I hope I can Hang On

belize44

Senior Member
Messages
1,662
I went to see a Pain Management Specialist today. They had me fill out a lot of paperwork (was able to print and fill everything out ahead of time) and did an assessment where they had me walk (or try to) on my heels and toes, tested reflexes, and muscle strength. It turns out my right leg is slightly atrophied and weaker than the right. I have to go for an MRI in a week, then wait a week after that to be seen again. I guess they do all this delaying because of the "drug seekers." But it does nothing for people in pain.

I spent two nights crying half the night because my pain was so excruciating after an exhausting van ride. And all I had was Aspirin and Tylenol. I really hope this doctor can help me. But I am so brain fogged that I would like some advice on the following:

I managed to get an appointment with my Rheumatologist next month. Now that I have initiated with a Pain management doctor, should I still see the Rheumatologist?

I don't want to be accused of doc shopping, but I was an established patient with her before I decided to try pain management. Also, so far all she did was prescribe LDN which did not help very much after all with my pain issues. And I also felt her to be not supportive when I told her that I didn't know what I was going to do when the LDN wasn't working out. She rather sharply asked if I wanted "pain meds." I told her I had really hoped to have a success with the LDN, so accepted another script for it and haven't touched it. I actually felt intimidated by her and have only made an appointment with her because I wasn't sure I could get in anywhere else.

I am so confused I would really like some feedback about this. Do I simply stay with Pain management, or stick with my Rheumy, or see both? Thanks!
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
Sorry you're dealing with this. Chronic pain is incredibly draining. Has the rheumy identified a reason for your pain? Pain definitely needs to be treated and the pain management team may be the best for that, but finding the underlying cause is important too. If the pain docs are looking into that I'd stick with them but if not then the rheumy could be good for that. If the rheumy knows you're seeing pain management docs and not wanting pain meds from her she may be more willing to listen.
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
I went to see a Pain Management Specialist today. They had me fill out a lot of paperwork (was able to print and fill everything out ahead of time) and did an assessment where they had me walk (or try to) on my heels and toes, tested reflexes, and muscle strength. It turns out my right leg is slightly atrophied and weaker than the right. I have to go for an MRI in a week, then wait a week after that to be seen again. I guess they do all this delaying because of the "drug seekers." But it does nothing for people in pain.

I spent two nights crying half the night because my pain was so excruciating after an exhausting van ride. And all I had was Aspirin and Tylenol. I really hope this doctor can help me. But I am so brain fogged that I would like some advice on the following:

I managed to get an appointment with my Rheumatologist next month. Now that I have initiated with a Pain management doctor, should I still see the Rheumatologist?

I don't want to be accused of doc shopping, but I was an established patient with her before I decided to try pain management. Also, so far all she did was prescribe LDN which did not help very much after all with my pain issues. And I also felt her to be not supportive when I told her that I didn't know what I was going to do when the LDN wasn't working out. She rather sharply asked if I wanted "pain meds." I told her I had really hoped to have a success with the LDN, so accepted another script for it and haven't touched it. I actually felt intimidated by her and have only made an appointment with her because I wasn't sure I could get in anywhere else.

I am so confused I would really like some feedback about this. Do I simply stay with Pain management, or stick with my Rheumy, or see both? Thanks!
I would keep the appointment with the Rheumatologist just in case you don't get any help from the Pain Management doctor.

I think today doctors are being much more careful about prescribing pain meds. Evidence is starting to show that a lot of the stronger pain meds don't work as well as was once thought. In fact, they are finding that the opioid pain meds actually increase pain over time - not help it. On top of that, the side effects are much more debilitating than once thought. :(
 

Invisible Woman

Senior Member
Messages
1,267
I wonder is it possible to postpone your next appointment with the rheumatologist until you have more of an idea of how the Pain Management Specialist works out?

You needn't necessarily say (at this stage) what you are doing. If pushed just say that you need to see a specialist about something else and simply can't handle too many appointments too close together.

Then, if you decide you still need to see her, you can tell her what steps you've taken to get the pain under control and explain what has worked (fingers crossed for you) and also what hasn't.

I'm not sure that this is doctor shopping as such - rather seeking a second opinion by someone who is a specialist in that field. After all, you might even find that the pain specialist advises you to see a rheumatologist anyway.
 

belize44

Senior Member
Messages
1,662
This really helps a lot; thank you for the responses. I know a guy who has been in severe pain for years, and he said that he has been on opioids a long time and now they are not working anymore. He is looking into a pump of some kind.

I don't want to be on opioids at all, and am hoping that if I must have them I can take minimal doses for episodes of more extreme pain. Also, I am hoping for trigger point injections as well. Having been in two car accidents over the years, I have whiplash syndrome which causes long car rides to be a major trigger.

I appreciate the links and will look into them! :thumbsup:
 

belize44

Senior Member
Messages
1,662
Sorry you're dealing with this. Chronic pain is incredibly draining. Has the rheumy identified a reason for your pain? Pain definitely needs to be treated and the pain management team may be the best for that, but finding the underlying cause is important too. If the pain docs are looking into that I'd stick with them but if not then the rheumy could be good for that. If the rheumy knows you're seeing pain management docs and not wanting pain meds from her she may be more willing to listen.
The underlying reasons for my pain has been mystifying doctors for over 20 years, alas. The pain that is upper most at this time is neck, spine back and hip pain. I am assuming this is a combination of suspected Ankylosing Spondylitis, and the results of two auto accidents, plus Fibromyalgia.
 

Chocolove

Tournament of the Phoenix - Rise Again
Messages
548
@belize44 Have you checked out Magnesium? Magnesium can relieve pain.
Since an estimated 70-80% of Americans do not consume the RDA of magnesium, that has huge health consequences.

A long term deficit of magnesium might be at issue since this mineral is used by the body at the cellular level on up. Hundreds of enzymes in the body require magnesium to function... The body may take months to replete a deficit so benefits may not be apparent at first as the body begins much needed repair.

Here are some articles about pain relief through magnesium:

Clinical experience, as well as research in nerve pain conditions such as pancreatic cancer, has shown that magnesium can be an effective treatment for pain. Although it is clear why magnesium can decrease muscle pain (it makes muscles relax), why it would help nerve pain was less clear...
Magnesium for Pain Relief | The Dr. Oz Show
www.doctoroz.com/blog/jacob-teitelbaum-md/magnesium-pain-relief

  • Can magnesium help muscle pain?
    Although it is clear why magnesium can decrease muscle pain (it makes muscles relax), why it would help nerve pain was less clear. A new study on rats to be printed in The Journal of Physiology confirms our clinical experience that magnesium decreases nerve pain \xe2\x80\x94 while also pointing to how it works.
    Magnesium for Pain Relief | The Dr. Oz Show

    www.doctoroz.com/blog/jacob-teitelbaum-md/ma…
    How much magnesium should you take daily?
    Typical doses are: magnesium citrate 8.75-25 grams (150-300 mL of magnesium citrate solution, 290 mg per 5mL). magnesium hydroxide 2.4-4.8 grams (30-60 mL of milk of magnesia, 400 mg per 5mL).
    magnesium supplements – WebMD

    www.webmd.com/vitamins-supplements/ingredient…
    What magnesium does for your body?
    Magnesium is a cofactor in more than 300 enzyme systems that regulate diverse biochemical reactions in the body, including protein synthesis, muscle and nerve function, blood glucose control, and blood pressure regulation.
    Magnesium — Health Professional Fact Sheet

    ods.od.nih.gov/factsheets/Magnesium-HealthProfe…
    The daily Recommended Dietary Allowances (RDA) for elemental magnesium are: Age 1-3 years, 80 mg; 4-8 years, 130 mg; 9-13 years, 240 mg; 14-18 years, 410 mg (boys) and 360 mg (girls); 19-30 years, 400 mg (men) and 310 mg (women); 31 years and older, 420 mg (men) and 320 mg (women).
    magnesium supplements – WebMD
    www.webmd.com/vitamins-supplements/ingredient…
 

belize44

Senior Member
Messages
1,662
@Chocolove: Yes, I take plenty of Magnesium; both Magnesium Taurate and Magnesium Citrate. Thanks for the links, though! I can safely say that I rarely, if ever get migraines anymore since starting this supplement four years ago. However, it has no noticeable affect on my pain levels.
 

Chocolove

Tournament of the Phoenix - Rise Again
Messages
548
@belize44 Glad to hear you are getting the magnesium which will allow your body to utilize many things like B vitamins which are essential to nerve health. Here are a couple of articles which discuss nutrients and cofactors necessary for nerve health and repair which may help to find what is missing and is needed.

Iodine, another commonly missing nutrient in America, is necessary for the body to make the myelin protective sheaths that encase and protect nerves. How is your iodine intake?

Iodine, another trace essential mineral, supports your myelin. Iodine plays an essential role in the function of your thyroid gland, a hormone-producing gland that secretes thyroid hormones, which play a role in several physiological processes. Thyroid hormones help your cells activate genes, triggering the production of specific proteins. One such protein is myelin basic protein or MBP, an essential component of the myelin sheath. A severe iodine deficiency reduces the levels of thyroid hormone in your body, which in turn reduces the amount of MBP produced in your brain and prevents the proper formation of the myelin sheath.
...http://healthyeating.sfgate.com/myelin-sheath-nutrition-2065.html

http://www.dynamicchiropractic.com/mpacms/dc/article.php?id=56836

http://www.dynamicchiropractic.com/mpacms/dc/article.php?id=56879

http://www.cam.ac.uk/research/news/...e-damage-in-multiple-sclerosis-study-suggests
 

JES

Senior Member
Messages
1,320
I don't want to be accused of doc shopping, but I was an established patient with her before I decided to try pain management. Also, so far all she did was prescribe LDN which did not help very much after all with my pain issues. And I also felt her to be not supportive when I told her that I didn't know what I was going to do when the LDN wasn't working out. She rather sharply asked if I wanted "pain meds." I told her I had really hoped to have a success with the LDN, so accepted another script for it and haven't touched it. I actually felt intimidated by her and have only made an appointment with her because I wasn't sure I could get in anywhere else.

I am so confused I would really like some feedback about this. Do I simply stay with Pain management, or stick with my Rheumy, or see both? Thanks!

LDN has been helpful for my neuropathic pain. I would say it's much better than most pain meds in that it doesn't mess with your head while still having a moderate effect. What dosage were you on? Pregabalin (similar to gabapentin) is one of the most prescribed pain meds and will reduce many types of pains, as will SNRI type antidepressants, but in my experience most of these meds give a "drugged" feeling as a side effect.
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
This really helps a lot; thank you for the responses. I know a guy who has been in severe pain for years, and he said that he has been on opioids a long time and now they are not working anymore. He is looking into a pump of some kind.

I don't want to be on opioids at all, and am hoping that if I must have them I can take minimal doses for episodes of more extreme pain. Also, I am hoping for trigger point injections as well. Having been in two car accidents over the years, I have whiplash syndrome which causes long car rides to be a major trigger.

I appreciate the links and will look into them! :thumbsup:
I have a family member with FM, arthritis, and back pain caused by a fall, and the longer she takes the pain meds, the worse her pains gets. I really wish that she would try and get off of the heavy dute ones, but she doesn't see what is happening to her. She has turned into someone I don't even recognize anymore. She used to be very friendly and outgoing, and now she sits home by herself most of the time and just doesn't sound happy at all. It's very hard to see this happening to her. :(
 

Chocolove

Tournament of the Phoenix - Rise Again
Messages
548
@belize44 Have you heard of near infrared light therapy? It is being used rather dramatically in healing and pain reduction. Have your doctors yet heard of this?

Dr Thomas Burke on Managing Pain - YouTube
upload_2017-2-25_14-17-20.jpeg▶ 1:50
Mar 10, 2015 - Uploaded by LED Therapy Lights
Dr. Thomas Burke describes how the In Light Wellness Systems pads can ...

Dr Burke December 2010 Patient Results before & after red light + ... ▶ 15:06
Nov 4, 2012 - Uploaded by Stephen Yeng
Innovative light technology on to medicine. ... Dr Burke December 2010 Patient Results before & after red ...
 
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PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
A pulsed electromagnetic frequency (PEMF) device helps some people deal with pain. Joseph Cohen wrote about the ICES PEMF device here. Apparently:
"Dr Dennis [the inventor of the ICES device] has a personal stake in the game as he had serious back pain that the device has helped him with."
 

belize44

Senior Member
Messages
1,662
I have a family member with FM, arthritis, and back pain caused by a fall, and the longer she takes the pain meds, the worse her pains gets. I really wish that she would try and get off of the heavy dute ones, but she doesn't see what is happening to her. She has turned into someone I don't even recognize anymore. She used to be very friendly and outgoing, and now she sits home by herself most of the time and just doesn't sound happy at all. It's very hard to see this happening to her. :(
That's terrible, TigerLilea! The way that I have always handled pain meds it to take them for a minimum of two days then stop, once the edge is off and using other things like muscle relaxants. I don't believe that pain medications are the ultimate solution, but there are times when I need to have something around. I never want to be taking them on a daily ongoing basis. Especially for things that can be addicting. I haven't given up entirely on the LDN, but hope to try again some day.
 

belize44

Senior Member
Messages
1,662
A pulsed electromagnetic frequency (PEMF) device helps some people deal with pain. Joseph Cohen wrote about the ICES PEMF device here. Apparently:
"Dr Dennis [the inventor of the ICES device] has a personal stake in the game as he had serious back pain that the device has helped him with."
Is that like a Tens Unit? Because I have one of those.
 

belize44

Senior Member
Messages
1,662
LDN has been helpful for my neuropathic pain. I would say it's much better than most pain meds in that it doesn't mess with your head while still having a moderate effect. What dosage were you on? Pregabalin (similar to gabapentin) is one of the most prescribed pain meds and will reduce many types of pains, as will SNRI type antidepressants, but in my experience most of these meds give a "drugged" feeling as a side effect.
I don't remember what dosage I was on. The problem was that when I had severe pain, not only was the LDN not effective enough, it also prevented me from taking something that would relieve my pain more effectively.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
My GP prescribes my all my pain meds, including morphine, Vicodin, flexeril, lyrica, all on a daily basis. I chart all my meds. He loves charts and documentation! He tried to get me to cut back on morphine, but when I showed him how much sleep I was losing due to pain, and taking repeated doses of Vicodin at 1 a.m., 3 a.m., etc., he changed his mind about restricting morphine.

Maybe it would be helpful for you to keep a record that shows your intake of Aspirin and Tylenol, to show that you're taking way too much of it and it's not helping. It is especially important to show that you are taking it at 1 a.m., 3 a.m. 5 a.m. and that your pain is interfering with sleep. You can then say something like "40% of the time, pain interferes with sleep. Take a look at this chart." You can highlight the nights you were in pain.

Large amounts of Tylenol are harmful to your liver and kidneys. If anything, taking a narcotic will reduce the need for Tylenol and preserve your liver. I think the guidelines for maximum daily intake for Tylenol might be 2000mg/day but I would ask your doctor (any doctor) what the current guideline is.