posted
First off, I will say that my surgery went fine....as far as surgeries go. I didn't die or get an infection. However, I got NO pain relief whatsoever. I am supposed to have another one but I really can't bring myself to do it (almost) and I will tell you why.
I knew going into this that Lyme patients aren't supposed to have anything with steroids...but thinking how SMALL the amount was that would be injected into my neck, it just seemed like it wouldn't affect me at all. Plus, another main reason I did do it is my pain level is so high and opiates don't work for me. Also, my family seems to be dumbfounded on why I just didn't have the surgery and simply "BE OUT OF PAIN"...sounds so easy and simple! That always irritates me. My pain isn't structural whatsoever, I KNEW it wouldn't work, I have burning skin and horribly tight neck muscles and it just didn't seem like it would help. But ANYWAY....I had the surgery.
2 days after the surgery, I started experiencing the most God awful fatigue. Almost a week later, it hasn't lifted. I know that a lot of Lyme patients complain of fatigue and I'll be honest, when people talk about CFS and stuff, I have always thought "How could anyone be so tired that it's called a 'syndrome'"???
Yeah, since I got sick, I have been a bit fatigued but always get through the day and don't even really think about it. But this....this is just something else.
Is it possible that getting the steroid shots in my neck could have affected my Lyme? Is that even possible or just a coincidence? I have never experienced stuff like this. I have found myself so tearful because I am so tired, it almost hurts to make myself do anything. Everything feels slow. My mind, my body. I can't do anything to make it better. I am feeling "mad" because my very active little boy wants me to play or get him a snack, or even TALK....because I am just so fatigued. It's not his fault! I just want to lay still in bed and do nothing but veg. My movements feel slow, my mind, what's going on?
Anyway, I feel so much worse after this surgery with NO pain relief to my neck. I am just at a loss. I know my doctor wants me to "finish" with having another surgery but going on how I feel with the fatigue and knowing I had no success with the first surgery - I don't know if I can do this to myself again.
Could it be true? That small amount of steroids screwed me up? I don't know if it's in my head, but I swear I'm noticing twitching when that was the ONE thing that got resolved with i.v. Rocephin. It started last night.
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
It doesn't always mean that it was the steroids that is causing you an aftermath of fatigue.
It is well documented with Lyme that any trauma and stress to the body if you have Lyme can set symptoms in motion.
It also could have really stressed your adrenals. I take pantothentic acid (b-5) when my adrenals are stressed. It really works. Sorry you are having such a hard time,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Just a question though. How was your surgery supposed to help the burning skin sensation? It sounds like you have neuropathy so I am curious as to what the dr thought the surgery might do?
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Surgery period has been known to cause flares in lyme disease, fibromyalgia, etc.
The theory is that the surgery weakens your immune system so the germs have a field day, so to speak.
You don't tell us what the surgery entailed, but you do mention steroid shots in the neck. Here are a few quotes from Burrascano about that:
"More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids." (p. 4)
Note: intraarticular steroids means steroid shots into a joint.
"absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example)." (p. 20)
Burrascano's message is clearly not to get these kinds of shots.
Evidently, the shot put into the joint doesn't just sit there, it disseminates. A lady (doesn't have lyme) recently told me that she got a steroid shot in her back for pain, and it also made the pain in her shoulder go away.
Also, others have told me that when they got a steroid shot in their back, the doc clearly told them not to put heat on the spot or exercise, etc. because that would make the steroid disseminate throughout the body quicker.
It makes sense that when you inject a liquid like this, it eventually gets spread throughout the body.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Can you tell us what surgery you had? I have a lot of neck/shoulder pain. I've done prolotherapy and trigger point injections. I'm having Botox injections the next time I go to the pain clinic.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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posted
I had Botox way before I tried this. I think I had it in Sept or Oct of 2008. I thought because of the nature of my pain, the Botox would help....but it didn't. I feel like a freak of nature. So, I tried this....and I hate to say....it was almost so I could "say I did" to my doctors and family because they don't know what to do with me anymore.
I have neuropathy in my FACE and it is horrible. My face burns so bad, especially on a certain side, and in the morning - some medications do help the burning in my face but not in my neck - which I don't understand. The pain is of the same nature but it's a bit different.
I always feel like I just landed here from Mars when I start trying to explain it.
I think what I read was that I was getting was "epidural steroidal injections".
Anyway, I just feel noticeably different and way worse.
I read about prolotherpy (I think) and I thought people said that it was dangerous or something? I don't know, but I would do almost anything to get rid of this pain.
I have a lot of burning pain but it seems to be a bit different in one place to the next. My foot burns and has shooting pains but it is controlled great with medication, the same with my face. My neck is the one thing that just doesn't give. Klonopin helps but I swear I am like an elephant and it just takes too much to get to where I was relief wise a year and a half ago with it. Tolerance.
I need something more permanent and I'm up for anything. My neck pain is burning skin but so much of it feels muscular but it's NOT stress. It's beyond my control, it happened out of the blue when everything was fine. It is mostly on my right side (while most of my other problems are left side related) and the pain is worse when I swallow, talk, chew, and it feels like my muscles have enormous pressure and burn.....it's always there but is very bad when I move my mouth (it hurts the sides of my neck). When I take Klonopin, I feel free again from my body but only for a short time. I am convinced that a lot of this is muscular in my neck but I don't know why it's doing this.
I have no tension in my shoulders or anything. I'm not tense. It's not a spasm or anything because it's constant - it hasn't stopped on it's own since it started, in early 2008. It was my first symptom besides swollen lymph nodes that made me go to the doctor because I couldn't take the pain anymore. It's a year and a half later and I really just want to end it all. There's just no hope. My whole existence is miserable, I used to have hope and just think that everything will get better, some how, some way, but it's just not. There is no way.
I'm thinking maybe they should do some kind of local injections into the muscles. Is there such a thing? I don't know. My pain doctors SHOULD know about it. They seem to treat a lot of structural problems, so when I come in with burning skin and tight muscles that feel pressurized against my neck, they have no clue - but I also know that I can't keep going like this. I'm just about done. I hate this world. Everyone should have a right to fight and keep hoping. I have no way for treatment and it just KILLS me, almost literally, that I HAVE to sit here and endure this...with no way of enjoying life or hoping to get better. No money, losing health care in Sept., no one to really help me, ahhhhhhh
Pity party over. Sorry. Don't have anyone to really talk to that much and these small apartment walls really close in on you at times. I'm not used to it. Thanks for listening. If anyone knows what might be good for my weird pain from Mars, let me know. Is this damage from Lyme or is this something that can be reversed?
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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posted
I had horrible, burning neck pain which is now all gone. There's another thread about that.
In January of this year, before I knew i had Lyme, I had a steroid shot. Within days I was sick as a dog. Crushing fatigue, popping,crunching joints, and horrible joint pain. In fact, these were all new symptoms for me.
I am convinced the steroid shot caused all the Lyme symptoms to Flare Big Time! And it did not relieve my neck pain! Now I know steroids are contraindicated in Lyme patients.
But, I am pain free now from meds and accupuncture.
Posts: 103 | From Northern VA | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
A lot of people can't do the anesthetics either. I'm sure that didn't help. You might try to get it out of your system faster with a soak or two.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Happened to me. I had facet joint block injections (lidocaine + steroid injected) and am sad to say that the part-remission I considered myself to be in gave way and I have since been back on full ABX.
My joint pain (not the facet joints- the injections actually did help there, but rather my typical lymie joints- knees, ankles, and such) flared up big time around the third day after the injections and are still yanking me around.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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I feel like a freak of nature. So, I tried this....and I hate to say....it was almost so I could "say I did" to my doctors and family because they don't know what to do with me anymore. 
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