Can You Relate? Warning!! Long & Wordy Sorry :0/ - Howell,MI
Updated on
March 02, 2012
M.Q.
asks from
Howell, MI
9
answers
About a year & a half ago I contracted the coxsackie virus from my kiddos (don't even know how they got it; it's very rare in adults) symptoms for them & hubby were very mild but included flu like symptoms, fever, sore throat & sores in the mouth. When I got it; it seems that I had the worst case of it 104 fever, heart palpitations , sores in my mouth & blisters on my hands & feet that made it painful to walk. I was admitted to the ER for fever & heart palpations the concern was pericarditis (damage to the lining/muscles surrounding the heart). I was dismissed from the ER after receiving 4 bags of IV fluid & after receiving meds for the palpitations.
When I was seen in the ER I did not have the rash/blisters on my hands or feet that came about 24 hours later so my discharge papers from the ER said viral pharyngitis but the ER dr. sent a note to my family dr to schedule me for a follow up regarding the heart palpitations. My follow up w/my family doctor was 3 days later he gave the official diagnosis of coxsackie & he is the one that told me how rare the virus is in adults. The sores in my mouth made it extremely painful to eat anything & the only thing that I was able to tolerate was room temp water to drink the blisters/rash on my hands & feet were extremely painful & itchy so after several days my skin literally began peeling along w/a couple fingernail & toenails that have since completely regrown.
Anyway, he scheduled me to have an EEG about 4 weeks later as a follow up to the palpitations to see if there was any damage from the virus & there was none, but I was also suffering from pain in my left side just under my last rib that wraps around to my back about 2 inches from my spine (the pain feels like a very, very sore muscle or like a very new bruise) it is only painful if pressed on or if my kiddos hug me & squeeze...my dr said that it was very possible I could have an enlarged spleen due to the virus & told me to take it easy & scheduled me for another follow up in a couple of weeks. A couple weeks went by & I was still experiencing the pain so I went for an ultrasounds and MRI neither showed anything but a normal looking spleen...so my dr very perplexed sent me for xrays & would diagnose me w/chronic rib pain he sent me for a consult w/a physical therapist specializing in Chronic Rib Pain I spent 6 weeks w/her (she recommended 8 wks) & she released me 2 weeks early because there was no progress.
I went back to my family doctor & he sent me for a consult w/a pain specialist who has since diagnosed me w/nerve damage/pain/inflammation & prescribed me neurotin taking 4 pills a day, but I am only able to handle 3 pills even at 3 pills I am unable to focus, I find myself at a loss for words at times unable to articulate what I want/trying to say.
Before taking the pills I came home & of course looked it up to see how, why & for what it's prescribed for I decided at that point I was not taking them & scheduled another appointment w/my family doctor & voiced my concerns at not only the medication that was being prescribed by the pain specialist but also how/why first going from an enlarged spleen to chronic rib pain (PT said she thought I may have somehow sprained my QL muslce but very odd because that type of injury is typically seen in football players because of they way they are constantly hit & I am not athletic do not participate in sports) & now to nerve damage/ pain/inflammation so my doctor never really gave me an explanation but believes it is somewhow related to the virus (at that point between the PT & my next follow up w/my family dr I am about 5-6 months post virus) he believes that I am in great hands w/the pain specialist & he agrees w/the prescription of neurotin & believes that it will not hurt to try (for diagnostic purposes) to see if it provides me any relief.
I went back to the pain specialist told him of my concerns that I don't feel that I have nerve damage because I don't feel any numbing, tingling or burning as you would w/nerve damage I told him it feels more like a bruise I also have a hard knot in that spot (muscle??) he told me the medication is not addicting & he was prescribing the med for diagnostic purposes again, to see it if provides any relief. The medication has not helped me at all & is clearly addiciting as I cannot miss a dose or I get severe headaches, nausea an overall sick feeling.
I have since been back to my regular dr because I am so exhausted that some days I'm doing good if I shower (I went 3 days last week before I was able phycially to shower just from pure exhaustion, not like me at all) on the weekends I'm not out of bed before 11AM because my hubby is home & can take care of the kiddos, my daughter has missed school because some days I can't wake up in enough time to take her) I told my family doctor that the meds are doing nothing for me & I'd like to get off of the meds he said that was a reasonable request but should discuss w/my pain specialist.
Two weeks ago I had a nerve block done at my T11, again, for diagnostic purposes I was also suppose to have it done at my T10 but my vitals became unstable by the time they had my T11 done my heart rate had dropped to 44 bpm, I became very pale, pasty, broken out into a cold sweat & was drifting in & out of consciousness I spent 2 hrs in recovery until my vitals stabilized & was given fluids before I was discharged I asked my pain specialist about getting off of the meds & he said it was a reasonable request & we would discuss at my follow up to talk about the nerve block & our next step. So now it's been 3 weeks since I've had the block it was only temporary (24 hr) during that time I had to journal my pain & if there was any change & there was none.
I am scheduled to see my pain specialist in 2 weeks. I am extremely frustrated because it will be 2 yrs this June since it all began. I am severely vit d deficient I am taking 50,000 IUs a week, I have hypothyroidism taking LevoThy 100 mcg (my dose has been increased 3 times in the last 4 months) I also have IBS-C(D) & take nortriptyline (50mg) for that along w/Amitiza 10mg 2 times a day to counter the neurotin (300 mg 3 pills a day) & nortriptyline because they wreak havoc w/my IBS. Before I got involved w/the pain specialist I would say my overall complaint is lack of energy, feeling tired & generally just achy all over but this pain in my left side has left me extremely frustrated. So my question, finally, SIGH is anyone else going through something similar at the side pain? Have you received a diagnosis? Any ideas or suggestions? I realize this post is long & wordy so thank you for taking the time to read it.
I just wanted to say thank you ladies for your responses. I'm happy to say that my pain doctor is weaning me off of the neurotin (gabapentin) this is going to take about 3 weeks...the side effects of missing a dose is horrible. Headaches, nausea & just a overall feeling of not being well. He has suggested lyrica after the weaning process, but I'm not sure because I feel like I'm just getting a band aid without any real answers. So now my doctor & I are trying to figure out together where to go from here. I have not been tested for Fibromylagia yet & I don't know why I haven't been. I've asked my family doctor about it & he says it's very possible that I could have it but he doesn't want to give me that diagnosis without trying to figure other things out.
I honestly don't know. I have read that it is a common link w/IBS.
I was on synthroid for awhile & just didn't think twice about Levothy. I will bring this up in a couple weeks. Thank you
More Answers
S.L.
answers from
Kansas City
on
Here are a couple of links to read.
http://medical-dictionary.thefreedictionary.com/pleurodynia The above describes symptoms from the coxsackie virus.
The below is about the above virus.
http://www.webmd.com/a-to-z-guides/coxsackie-virus It sounds to me like you can get the pleurodynia from it and that is very painful and you can read the symptoms. I once had pleurisy and it was so painful I couldn't stand it hardly. I would think this is something to do with the sac around the heart and not the heart itself and you should see another doctor until you find help.
The drug you are taking is given for shingles, and other things where there is neuropathy but it sounds to me you have something other than that but of course I'm not doctor, etc. You need to contact someone else for another opinion and maybe it just takes time to get over this since it's not common in adults.
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S.B.
answers from
Houston
on
Try taking Synthroid instead of the generic brand for your thyroid. I can't take the generic. It doesn't work. Your tired and fatigue could be a result of the thyroid. I am so sorry you are going through all this. I would seek out a second opinion regarding the pain management and I would get off the drugs. Chronic pain is difficult. Have you been tested for fibromyalga?(sp)
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C.C.
answers from
San Francisco
on
Have they checked to make sure that your hypothyroid condition is really being properly addressed? (Not just a TSH test, but also free T3/T4 tests?) If you're not responding well to LevoThy, then how about desiccated thyroid? It's more expensive but if your body can't turn T4 into T3, T2, and T1, then you still have an untreated thyroid condition. That could be causing a lot of your issues.
Aside from that, I'd highly recommend finding a good acupuncture doctor. That entire field is entirely dedicated to pain management via calming inflamed nerves. I know several people (my husband and a cousin included) who were in HORRIBLE pain (my cousin was on LOTS of Vicodin for months) and their pain was completely resolved through a few acupuncture treatments. Worth a try, I think!
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N.P.
answers from
San Francisco
on
I haven't had to deal with precisely what you've been going through but I've had to gut through life with pain for many months before I was diagnosed and had to undergo surgery, so I understand your frustration to a degree. The only advice I can give you right now would be to go back into your post and edit it to add paragraphs.
Being long and wordy is fine and dandy (I suffer from verbosity myself), as long as you have some visual breaks between one thought and the next. It's hard for many people to read a "wall of text" and people will see it and pass on reading it, thus denying you any wisdom they may have been willing to impart.
I hope you find relief soon. I ache for your suffering. It's no fun when they can't figure out what the problem is. I've been dealt that card twice in my life, but there was always a resolution before too long, and definitely before a whole year, let alone two, had passed.
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M.L.
answers from
Tampa
on
Have you been to a cardiologist? The fact that you are tired all of the time could be a number of things, including your thyroid, heart, and many others, but I did see from the other post that Coxsackie can lead to an inflammation of the heart and the fact that your vitals decelerated and you went bradycardic should be of concern. Did they explain why you became unstable? Unfortunately, a lot of times with medicine, it's ruling out illnesses before you can diagnose, but I would start with all the things Coxsackie can lead to (side effects and complications), and start ruling out. What do you know about the medications you are on? Start looking them up, look at all the side effects and complications with your medications also.
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K.M.
answers from
Detroit
on
First off the cox sacked sorry my spell check doesn't recognize it. But anyway that very is a vaccination kids get when they get there shots its a virus they enter in dormant but with the humane am mine system will reactivate it just like the flue shot don't recommend that one either. Anyway from your description is u had shingles which instead of chicken pox adults get shingles it's very painful. Ur family dr. Is full of it it's coming out n being seen in more adults in the las two years. Those that had or not the chicken pox get it. My cousin had hickey pox bad as a child n got shingles as a adult. She had nerve n pain damage in her left arm it hurt for up to a year in a half. It's just some people deal with nerve damage in different spots of the body. It can effect everyone different I know of a va patient suffered shingles on forehead n he has nerve damage in the forehead n face. It's been two years. I suggest getting off the meds is first priority unfortune you will go through withdrawal deal with them get clean. Find out ur results in two weeks sign out ur file get ur file from ur family dr. Find new dr.s I think your family dr. Doesn't know what he's talking about n the pain guys all about shoving meds in people. Get a second opinion get off meds take Motrin for pain. Good luck!
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A.R.
answers from
Dallas
on
Have you talked to your dr about shingles? My GMIL and I have both had it. I got treatment very quickly, day the rash broke out, and did not end up with nerve pain. GMIL did not and ended up with debilitating nerve pain that she still has 2 years later. The neuro meds they give for shingles are really only effective if given very early on, the longer you wait the less effective they are. Talk to your doc about shingles.
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M.P.
answers from
Portland
on
Fibromyalgia is a last resort diagnosis. You want to find out, first, if there is a condition that can be treated before you "give up" and settle for Fibromyalgia. You are having many more symptoms than you would have if you just had fibromyalgia.
I agree with Nicole. Rewrite this with breaks in it. I didn't read it because it is so long. I skimmed part of it and thought I might have something to add but it's too big a job to search out the details to know for sure.
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V.C.
answers from
Dallas
on
I have a great nutritionist who has helped many people. Her website is a-healthy-balance.com Contact her and see if she thinks she might be able to help you or refer you to someone else.
Otherwise, you might search to see if there is a website or some other support group for this ailment. People who have had it may be your best source of advice.
