Topic: Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy
Rumigirl
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posted
I need to be in touch with anyone who has or had this, or who has much understanding of it. I know a lot about it, and, of course, know that Lyme and Bartonella are connected with it.
But I only know one person who has/had this, and don't want to overburden ths one person!
This condition is beyond belief awful. I knew that from decades ago, when I had a client with it. But having it . . . I'm not sure that
I am going to survive this along with all the rest of the deterioration. Or that I will want to survive with what I've got.
Thank you!
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GretaM
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Hi Rumi, Yes, I had this diagnosis. 3 times.
Personally, it was an injury that started the nerve damage, but I think bartonella and lyme settled in, and that is what made it stay.
Because....treating makes it go away (mostly), although the side that was affected is now, and will probably always be smaller and prone to getting cold with the nerve fire zingers.
You can PM me if you need more info.
Magnesium calms this down sometimes. Othertimes it is unbearable.
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lpkayak
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Hi greta! Good to see you. Pm didnt work for some reason
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Rumigirl
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Oh, Greta, thank you, thank you, thank you!!! I will PM you. I know, of course that Bb & Bart are the cause in addition to the nerve
injuries. Unfortunately, I had repeated, severe injuries, so it is not only the Bb & Bart, but it's a mass of scar tissue in there, (horrible
surgery, too, which was needed, due to complete rupture of my hamstring tendons from the sitz bone).
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Rumi - I am so sorry you are going through this. Please know you are in our prayers.
Would the SOTA Magnetic Pulser help you with the pain? Btw - I am in no way affiliated with this product. We are looking into getting it for our son for his pain (he does not have Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy).
The PEMF model is one which professionals use in their offices. Perhaps you could find one who uses it in your area if you contacted the SOTA distributor?
Btw - how is one diagnosed with these conditions? Are certain tests run?
I found some old posts about severe pain which might help you:
Regarding the guarantee, read all the info at the SOTA site. You can also google for info about pulsed magnetic therapy, and all the different uses for it.
Razzle
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posted
When I had RSD/CRPS, magnetic fields, acupuncture, vibration, electro-stim, IR heat, etc., all increased the pain and inflammation for me.
However, other members of a local RSD support group ranted and raved about some kind of light therapy (I don't remember the name of it anymore) that seemed to be very helpful...I was already in remission by the time I heard about it, or I might have paid more attention...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Silverwolf
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Hi <<<<< Rumigirl >>>>>,
Prayers going up for you, I am pretty sure that Paula Abdul had/has this, from an interview I heard some years back. it was horrifically painful for her.
I'll check back later, will let TxC' know too, and we can keep you in prayer.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Rumigirl
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Oh, bless you guys, all of you!!! I am going through such "dark nights of the soul" it is not to be believed. Thank you so much for your prayers and your suggestions.
I do have 2 PEMF devices (believe it or not!), and may try one. I am a little hesitant to, because so many things have made the pain
horrifically worse. The pain has been at the "emergency" level and only getting worse day by day.
Neurontin and even oxycodone barely make a dent, even multiple doses of each. The oxy I reserve for very late at night horrible pain, and only tiny doses.
It is taking everything I've got not to end it all. Don't worry, I won't, I know how bad that is. But if I didn't know how bad it is both for the people left behind and spiritually, I, frankly, would do it. But I know I can't.
It is so hard to soldier on when my life long ago has deteriorated into unending suffering and struggle (Sorry fo the bad attitude).
To add insult to injury, I was calling the sec'y of the doctor who did my nerve block to see about a cancellation for one today.
There was none. But I ended up staying up all night with the pain, taking more stuff and reading a spiritual book for solace.
So I slept late today (although very fitfully, due to horrible noise from a building they are tearing down behind us, and then will be building a 12 story building right behind us---so years of horrific noise).
So I missed a call this am from the sec'y that they had an opening for today, but it was too late when I got the message. So I have to wait another week.. I was so mad (no one to blame but myself).
To top it off, I realized the other day that although I have way too many doctors and pay a fortuene, NO ONE is responsible when I am in trouble, and I am on my own. If I end up in a hospital (God forbid), none of them could help.
I had really bad blood tests last week from hemolysis, but my LLMD didn't want to deal with it. In all fairness, I am way overdue for a follow up due to all this.
Well, I am jiust complaining here, but aside from you guys and my husband, I am on my own----I mean medically.
Thank you, thank you, all of you, it means so, so much to me that you care and that you have suggestions. I swear, this CRPS is from the devil!! (Not really, but . . . ).
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Kudzuslipper
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Oh Rumor. I am so sorry. I don't have any personal experience but read this memoir a while back... Reads like a novel you can you relate to... I don't think you will find any earth shattering info in it. But It will keep you company at night when you can't sleep.
Praying for comfort and strength. The SOTA sounds like a good possibility.
Or the anadyne??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Rumigirl
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Thank you, thank you, Lymetoo, and Kuduzu! Thank you for all the prayers and links and information. I feel like I need a huge stroke of grace, a miracle. But with this condition, it is more likely going
to take a ton of enduring and pressing forward, in spite of pain to put it into remission. All kinds of things that I would have thought
would help make it excrutiatingly worse, like ultrasound, which is similar to what Razzle said. That's why I'm a little leary of PEMF, but I will try it cautiously.
It's not like other kinds of pain at all. It's far, far worse!
Everyone's responses really helps me to bear it and press on, while praying for grace. This is one I REALLY can't do on my own. Which is maybe my spiritual lesson.
When I grew up I had to do everything myself, so I still have that mindset, even though it often doesn't work! I have to relearn that lesson repeatedly.
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Rumigirl
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quote:Originally posted by Lymetoo: Rumi ...
Praying for comfort and strength. The SOTA sounds like a good possibility.
Or the anadyne??
Lymetoo, "Or the anodyne"? What do you mean, pain meds of some sort (that is one meaning of the word, medecine).
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Rumigirl
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OMG, Kudzu, I just checked out the link, boy is that ever right up my alley now!! I'm going to get that book, either on kindle or regular book. Wonderful! And how apt just after I was talking about grace!!
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Rumigirl, So sorry you are dealing with this. Is this similar to fibro?
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Rumigirl
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Lymetoo, gee, I don't know if it would help or hurt. The weird thing is that ultrasound, which I've had a lot in the past, and I always loved, would seem like a completely innocuous modality. I could
never feel it before, but would get a lot of relief. But with CRPS, I had it in August or Sept. with my PT, and the pain was beyond belief for many, many days. I was practically sobbing leaving the
PT's office, not knowing how I could get home it was so bad.
I had an ultrasound at the end of April to see what was going on inside the areas of pain/injuries/surgery, and, again, the pain during and for many days afterwards was excrutiating beyond
belief. So this is completely different from any kind of pain I've ever had before. All the things that usually help me make it unendurably worse.
I even flew to Chicago to the best Prolotherapy doctor anywhere, who I had worked with for years, to get Prolo, because it was clear that the repeated damage to the ligaments, tendons, and
muscles at my sitz bones and in my hamstrings had to be fixed, even if the pain became much worse at first. But what I didn't understand until it happened was that it made the nerve pain
horrifically worse, and it spread. So it made it much, much worse. Before, it always hurt a lot to sit (why I went, after the US doctor saw all the damage in there), But now I can't even begin
to sit at all. The only vaguely comfortable position is lying on my left side!! To eat, drink, sleep, get on the computer---anything.
And no meds even dull the pain without taking so much that I am blotto, which scares me (afraid of tripping and falling again). I would never take even low dose neurontin and go anywhere.
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Rumigirl
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quote:Originally posted by soccermama: Rumi, there is a pain specialist in San Diego that works with this condition. She has a blog and really works to get people off of narcotics.
I can't remember if you live in California but she might be worth a visit.
Soccermomma,
This doctor looks great!! But I am in NY and can't even sit to go anywhere. I need to exhaust the possibilities here first. But I will study her site for things I might try from here, if possible.
Thank you! I had heard that there was a good pain doctor there for CRPS.
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A friend of mine (who has this) just told me that oxycodone was the worst thing they could have you on.
So you really need to find an expert!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Rumigirl
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Lymetoo, I don't want to take it, but the pain reaches "emergency" levels, where neurontin, etc. just doesn't do it, it makes my heart beat really fast, and if you don't bring the pain level down
somehow, you can't get on top of it. No one told me to take it, the PM doc wants me to take A LOT of neurontin. But I am too sensitive to take that much. When I take it, it dries out my mouth horribly,
and I already am losing my teeth to severe Sjogren's (and my eyesight, too). When on neurontin, I literally CANNOT pee, no matter how much I drink!! (Urine retention). I am taking it though, but not in the day usually.
I already do not EVER have a bowel movement anymore unless I do an enema----horrible! Even with herbs, etc. Everything has pretty much stopped working altogether. This was happening long before adding a tiny dose of oxycontin occasionally late at night.
It feels like I have descended into hell in a way.
The Pain Management doc does specialize in CRPS, but mainly in terms of nerve blocks, neurontin, etc. Even he misdiagnosed me as not having it when I l clearly had it. Just because I didn't have
ALL the signs & symptoms. It is a very lonely place, when none of the doctors take responsibility, and I bear all of it on my own, regardless of how long I've seen them, how much I pay them, or even if I thought they were a friend/colleague (the prolo doc).
I know many on LN understand that one! It was a shock to think that if I ever had to go to the hospital, none of my doctors could
help (for TBD's, etc.). I would avoid it at all costs; they could kill one of us by not being willing to treat what we've got, allow supplements or needed meds, etc.
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You might want to contact her and see if she works with any doctor in New York. I remember reading on her site that she will only see an out of state patient if his local doctor will work with her.
She might have worked with someone in New York. That way you can go to that doctor who has benefit ted from her expertise.
It is worth a try.
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Carol in PA
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Rumigirl, I hope you'll find the courage to try PEMF.
Your low back and abdomen would be a good start.
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Rumigirl
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Yes, thank you, Carol. I am sooo overwhelmed with the pain & all of my terrible issues----yeesh!
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Rumi .. are you able to take magnesium?? I got into a lot of pain from piriformis about 2 yrs ago. It was murder. ReMag is what saved me. Maybe you could try that?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Rumigirl
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Yes, I do take magnesium, thank you, Lymetoo. My problem is that I can't take a lot of magnesium, or I get cramps reliably every time! I'm a metabolic type that doesn't do well with too much
magnesium, and needs more calcium, because I don't metabolize calcium well. (I know about this extremely well as I am one of the most experienced practitioners of Metabolic Typing® (not
trying to brag, just say that I know what I'm talking about). Arghh! Even so, I should probably increase it.
The prolotherapy doc that I went to 5 weeks ago told me when I emailed him that I should find a functional medicine doc who can give me DMSO drips, that that would help. So I need to find
someone to do that, if possible. I have been using DMSO topically with my rx pain cream and the oils to get them deeper into the tissues.
DMSO IV, or even orally (!!) is supposed to help a lot to dissolve scar tissue, which is one of my big problems in this area. So far, it hasn't helped that I am aware of, topically. But it is so bad in
those areas, it will likely take much more than topical applications. Apparently, it is safe to take it orally! Ewwww!
Well, I guess I'll get over that. But I will reek! Small price to pay, I guess. I'll have to warn people and chew parsley to counteract the smell somewhat.
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My son when he was receiving treatment for cancer took DMSO IV to force the chemotherapy deeper into the tissues.
While he smelled like creamed corn, he did not have any adverse effects.
My husband has done extensive research on DMSO, it is wonderful for inflammation and brain swelling. They pulled the drug when two rabbits developed eye issues because of it.
I applied it topically when I walked on a broken ankle for several weeks. It really helped with the swelling.
One word of caution, in my experience it had a cumulative effect and began to give me headaches.
I quit using it. Those headaches were so mild compared to the ones I can tolerate now.
I was such a wimp. I do have to say that this illness has developed a toughness and resiliency in me that I would not have without it.
Rumi, I will continue to pray for you. Pain is so debilitating. You are such a fighter and a courageous person!!! I admire you!!!
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By the way, I forgot to mention PeaPure. The San Diego doctor used to get it for her patients. It is a supplement that comes from Europe.
She is not able to get it in bulk anymore so she had to quit prescribing it. It is supposed to be awesome for pain, especially neuropathy. You can find the protocol on that doctor's site.
What I like about the supplement is that you will know in about three months if it is helping. Most supplements you never really know. But the research, and there is extensive research, says you will know in about three months.
I also read that people will pour a packet in the mouth with the onset of migraines and experience relief.
Here is a site that may still be selling it. Do some research to see if it will help with your kind of pain and then call the site to see how to go about ordering it. (I think you might have to have a doctor's script.)
Rumigirl
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Oh, thank you, soccermama! That is so sweet of you. I have a feeling that the DMSO drips could help. I will have to call to see who does it. Unfortunately, they may charge a fortune for first visit, etc., but we'll see.
I could try drinking some in the meantime---yikes, don't love the idea, but it would be small amounts diluted a lot. I've drunk an awful lot of strange stuff in this journey.
I'll look into the PeaPure. I've heard of it before.
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Rumigirl
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Lymetoo, I had some magnesium this am, and I think it did help some (duh!). I do need to do more magnesium, so thatnk you for suggesting what should be obvious to me.
I'll take as much as I can without getting cramps. It doesn't take much for this to happen to me, believe it or not. But slow & steady.
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Phoiph
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Rumigirl...
Please consider mild hyperbaric for your condition. Here's a link to a study on CRPS and hyperbaric:
It relieved me from 8 years of unrelenting 24/7, full body neuropathy. Looking back, I don't know how I hung on...it was moment to moment survival. I will help anyone I can get out of that nightmare.
I believe you've posted on this LymeNet thread in the past, but you might want to review some of the more recent posts which include others' experiences:
quote:Originally posted by Rumigirl: Lymetoo, I had some magnesium this am, and I think it did help some (duh!). I do need to do more magnesium, so thatnk you for suggesting what should be obvious to me.
- Glad to help. That is why I suggested ReMag .. it might not cause cramps for you. You can take less and get more benefit than with other mag.
As for DMSO, I used to get treatments for IC with that. I know about that smell! They instilled it into my bladder. Oh joy.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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I have had RSD for yrs in rt foot due to torn disc/sciatic pain L4/L5 I use Ketamine cream and take ketamine caps at bedtime. Also did ketamine IVs which helped but doc was too far to stick w it. Very hard condition to control.
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Rumigirl
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quote:Originally posted by Phoiph: Rumigirl...
Please consider mild hyperbaric for your condition. Here's a link to a study on CRPS and hyperbaric:
It relieved me from 8 years of unrelenting 24/7, full body neuropathy. Looking back, I don't know how I hung on...it was moment to moment survival. I will help anyone I can get out of that nightmare.
I believe you've posted on this LymeNet thread in the past, but you might want to review some of the more recent posts which include others' experiences:
Thank you so much for this. I know that you have said this before in response to a previous post of mine about the CRPS.
I guess I feel overwhelmed by the idea of yet more equipment in a small apartment that is overrun with many boxes of IV equipment and a multitude of devices: 5 different rife machines
& PEMF, an ozone machine & tank. an oxygen concentrator, & on & on, with no room for anything!
Not to mention expense! But I will consider it. What I wonder is whether using my ozone machine regularly for insuflations wouldn't be just as efficacious.
I never stayed with the ozone treatments, when I had difficult experiences with it in the beginning.
I am reluctant to only do one natural modality now (or even several), because I spent the first 3-3 1/2 years after diagnosis doing a ton of rifing, PEMF, ozone, herbs, allicin, etc. I herxed & detoxed a lot. But I only got much, much worse.
When I did abx, I finally made big improvements. However, I have had an unreal number of obstacles, which halted my treatments over and over again losing ground each time.
I lost my LLMD with no notice 5 times!!! Had to stop treatment, due to blood nmbers going too low, etc.
I have been thinking of doing ozone along with abx for now, since I am in such bad shape. I came very close to dying way too many times, including this past Jan & Feb. Then, I pushed to fight hard again. Only to have this now, which in retrospect has been going on for over a year misdiagnosed.
The truth is, I am in so much pain and so disabled now, I do not know how I can survive this at all.
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Phoiph
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Rumigirl...
I understand; I also had tried "everything" before mHBOT.
I often think that if I had found mHBOT earlier, I could have bought a fleet of chambers with all the money I spent on different doctors and modalities.
There are lots of differences between ozone and mHBOT; one being that mHBOT actually promotes regeneration of neurons.
Also, just an FYI...depending on what oxygen concentrator you have (if it is powerful enough), you may be able to use it with a chamber.
If and when you become ready to pursue mHBOT, just let me know...I'll be glad to help you get started.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Rumigirl
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OMG, how in the world did you two answer so fast??!! Truly divine intervention, if you ask me. Thank you so much.
I just did another nerve block yesterday, and cleared my schedule of IVIG treatments, follow ups with the Pain Management dr, etc. just to rest, but in spite of all that, the pain is beyond endurance, even
with a ton of neurontin. I think that I inadvertently sabotaged the block by massaging the area a little more than usual while I was pacing around the waiting room before going into the OR
prepping area. It felt great for 2 minutes, and then was on fire! I thought that the block would help that, but no. But it did take away all the red, blue, purple, and mottling of my legs and feet
(another hallmark of CRPS).
I am glad that you said that, Phoiph, about the difference. New neurons I need!
Thank you both for your caring and love and attention. It helps me to keep going somehow, even if I don't know the somehow.
I will consider it, Phoiph.
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Haley
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Rumigirl - did the pain go away with antibiotics? Just curious.
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Rumigirl
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Haley, No the pain has NOT gone away at all, it is escalating terribly!! I now have NO position that is even vaguely comfortable.
That said, I haven't been treated for Bart for a long time, due to losing my LLMD last year yet again. I also am not on sufficient meds for Bb, due to going off tindazole/flagyl right after my last
appt with another LLMD, when I realized that could be part of the problem. I haven't had another follow up yet, because: 1/ I can't go anywhere without extreme difficulty (could do a phone consult, if I forgo any insurance reimbursement for his humungous fee).
2/ I am having problems with my port and don't know if that is viable any more; I have to get that checked! If it isn't, I will be in a very difficult place, as it is not a small surgery to have it removed when the tissues have grown around it.
And if I wanted another line placed, that is yet more surgery. With CRPS any surgery is an extreme risk of the nerve pain starting up in a new area!!
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I am so sorry for your pain and all that you are going through.
I was actually considering prolotherapy for tendonitis and I know of the MD you are speaking of in Chicago. It sounds like the prolotherapy actually contributed to this, right? Is it the scar tissue that causes the nerve pain? How long ago did you have the treatments done?
I will keep you in my prayers.
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Carol in PA
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Rumigirl,
I hope you'll try PEMF soon.
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Rumigirl
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Thank you roscoe and Carol. I am just barely hanging in there, as the pain has only been increasing, in spite of everything I've done. Although, today is better than yesterday. Last night I lost it, the painwas so severe,no meds are helping much. I was so mad that the doctors kept emphatically saying I didn't have CRPS for so
long, when I clearly did. Sadly, I believed them, and we missed the window, when it is easier to turn this around.
roscoe, Prolotherapy has helped me enormously in the past. I"ve had tons of it done on and off for 22 years. (I believe Iha Ehlers Danlos undiagnosed). Plus tons of injuries.
But this time, it just made the CRPS go through the roof, so I no longer can sit at all, or walk without pain. And there is NO comfortable position now. It makes typing really painful.
I am so tired of doctors, I could scream. I know way more than they do about what I have and need, etc. I will never again believe a doctor above my own self (I usually don't, but I never had CRPS before).
Thank you, guys!
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The doctor in Chicago that I believe you were seeing has several articles on his website where he states that he can help people with CRPS. Does he know that yours was exacerbated by it? It sounds like you were being treated with it for a long time before the CRPS kicked in. Do you know of any other people where prolo set off CRPS? I'm sure if I ask the doctors about this, they'll just dismiss my concerns since they'll want my business, but hearing your story has me second-guessing treatment.
I'm sure you've looked into every therapy for CRPS, but I did listen to an interesting podcast by Dr Victor Pedro in Rhode Island who works in retraining the brain. I read an interview with Paula Abdul who swears by this guy for helping her with her long term CRPS. I hope my mentioning this does not come across offensive in any way. I don't know much about CRPS, but thought I would mention this to you in case it was of value in any form.
Again Rumigirl, my heart goes out to you. Sending light & love your way!
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Silverwolf
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Hi <<<<< Rumigirl >>>>>,
Just checking in to see how you've been, you continue in our tho'ts and prayers. So sorry to hear that you are not being able to feel any better.
We'll continue to keep you in prayer for relief from pain, and answers that will bring healing, and peace.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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It's experimental.. I think she is his first patient to try this!!
She said it was deep tissue laser therapy.
She's going to get 60 treatments and I think she's had about 15 so far. I'm not sure.
I'll keep you posted as this progresses.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, guys.
Lymetoo, if you find out more about the laser treatment, let me know. There are so many things that helped on or 2 people though.
Roscoe, yes, Prolotherapy helped me a LOT in the past. But in this instance, it made the CRPS nerve pain horribly worse. I emailed him about it, but need to email again to let him know just how bad and long-lasting it is.
He thinks that I need to come in for more Prolotherapy,
neurofascial Prolotherapy, and Platelet Rich Plasma treatment. Well, I agree that I need more. But there is NO way I could
possibly do it! I can't sit at all, can't get around, can only sort of lie on my left side, and have searing pain.
I just went for my 4th, and presumably last, nerve block this afternoon. I'm praying that it helps beyond a few hours. Otherwise, there really isn't much else to help.
They have yet to develop meds for nerve pain. i did discover, however, when they gave me premeds for the block, they gave
me 1 or 1.5 mg of ativan. It took the pain down a notch much better than neurontin does, or even oxy at the low dose I have occasionally taken.
I asked the PM doc about taking a small dose of that occasionally, as I've heard that people rotate meds frm different classes to avod dependency, etc.
But he doesn't do that. He only does (expensive) procedures and neurontin and maybe cymbalta. He said I'd have to see a psychaitrist for that. Really??? For meds for documented nerve pain? Yeesh!
Thank you, Silverwolfi ,for prayers from both of you! I appreciate it so much.
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I just can't get over it: EVERY single doctor over 15 months failed me in major ways that have caused untold suffering that has no cure now,
one right after the other. The surgeon was EMPHATIC that I didn't have it every time I asked. The PM doc said I didn't have
it, when my legs and feet were red, purple, blue, & mottled, and horrific pain. WELL THEY WERE WRONG AND I WAS RIGHT! But I beleived them. Won't ever do that again.
Posts: 3771 | From around | Registered: Mar 2008
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