Status
Not open for further replies.

6Hypnone

New member
Joined
Aug 17, 2015
Messages
3
Reason
DX FIBRO
Diagnosis
03/2015
Country
US
State
IL
Mine started shortly before my mom died last year (nov). It felt like bone pain--shoulders, forearms, outer hips, knees, hands, fingers, feet, legs.
I thought initially it was b/c I had stopped my cal/mag suppliment (on account of supposed IBS triggering). I went back on it and the pain went away for a while. Then came back. So had to go to GP and he thought I had/have fibro.

I saw an ND and one doc there thinks it may be ligament pain; another said it's not fibro, but myofacsial pain (that 2nd one has treated many ppl w/fibro).

I don't have any trigger/pain points--whatever you call them.

After I started Gabapentin, 100 mg, it stopped literally overnight. Eventually it came back, so went up to 200. Pain went away. Came back--went to 300. Pain went away, but began having electrical shock sensations and lots of itching. The itching went away, but not the shocks. I went back down to 200 and most of the shocks went away. Then the pain came back. So my doc wanted to switch me to Lyrica. I was scared so I alternated nights b/t 200 and 300 mg of Gabapentin--seemed to work sometimes, not all.

Then, (and still now) I got a sort of 'tickly' feeling--started in my head, then down my back. Now those are less, but not gone, but the tickly feeling is in my hands, chest, legs, feet. tongue, teeth. I swear I'm going to go crazy. I've even felt suicidal.
Went to ND again and they said may be side effect of the Gabap. So I stopped it that night, switched to 25 mg Lyrica.
Those ticklys have not gone away.

I also had a nerve 'pain' in my chest up to my jaw on the left. Ive had this before (starting many years b4 feeling fibro pains), sometimes when going to the dentist, when they clean my lower teeth. It lasts about a min after stimulation stops. My pcp said this was innervation and IS a thing. But when I had it recently, I was giving myself a breast exam and, the nipple area brought it on. The ticklies started like a day after this recent chest nerve event.

Anyway (thx for reading this far) I saw a Neuro, did some reflexes and such type of tests, all normal. Referred me to a rheumatologist, which I see on the 15th. I said that I read fibro pain can be due to neurotransmitter issues and she sort of agreed, but still said to see a rheum.
I also saw my ENT b/c along with the ticklies, I felt tired, head felt full, headaches, I almost passed out driving, ear were full. She gave me antibiotic. She didnt know what the ticklies were from (nor did any other doc). So I hoped the infection was causing it. I'm almost done w/the antibiotic and no change.

Anyone have any ideas? I also read the herpes virus can cause symptoms similar to fibro. I do have herpes (I only know due to a blood test).

I feel like I'm in a black hole, watching other ppl and friends do normal things. I'm miserable. As I type this, that tickly feeling is running through my fingers. It's driving me crazy.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
Hi there and welcome to the forum. There are many different diseases that have symptoms such as yours and fibro is one of them. I am guessing that the different doctors did blood work to rule out some of the worse case ones and now kind of left you hanging while they scratch their heads. Lymes and Lupus, Fibro and even MS can cause weird symptoms. The thing about fibro is all the tests come up normal. I am glad to hear your doctors got you on medications in a attempt to control the strange feelings and pain.

Now as you await your diagnosis the best thing you can do for yourself is self-management. Learn all you can about different ways you can reduce or stop some symptoms for a little while by use of relaxation and light exercise, warm baths and taking each day one step at a time. For some people symptoms go away and life gets better. If you can avoid as much stress as possible you will be on the right road.

Ask questions and add your thoughts to other members posts. Be helpful and supportive to others and you will make lots of cyber friends here. Looking forward to reading your posts. :)
 

6Hypnone

New member
Joined
Aug 17, 2015
Messages
3
Reason
DX FIBRO
Diagnosis
03/2015
Country
US
State
IL
Thanks. I actually replied to people even before posting myself.

I was tested for Lyme a few months ago I think. Most recently for RA and sed rate. A couple others (I think one for MS) a month ago. All normal.

I've also been working out (I go between strength and cardio) 5x/week for at least 6 years. I also stretch. I also have a genetic mutation--MTHFR.

I neglected to mention I've had a low grade fever since the tickly business started. One of the reasons I was put on antibiotics. It's usually 97.9 or so but has been bouncing b/t 98.5 and 99.3 for more than a week now--def. out of character for me.
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
I can't add much to what isweed has said,if blood test rule out everything else then it could be Fibro.have u seen a rheumatologist about Fibro.
Btw the tender point touch isn't 100 present .i don't have any of them.but years to come I might and so might u. It's just a pointer for them to use.
 

brahmatorry

Active member
Joined
Mar 4, 2015
Messages
75
Reason
DX FIBRO
Diagnosis
06/2012
Country
ind
State
sumatera selatan
If you have fatigue all days. Blur eyes. Maybe chronic fatigue syndrom CFS.
 

Getemgirl

Active member
Joined
Sep 8, 2015
Messages
98
Reason
DX FIBRO
Diagnosis
06/2015
Country
US
State
Utah
I get that facial pain that feels like sinus infection. I once was in ER and spent the night at the hospital because of pain on left side clavicle and up to my jaw as well as tingley fingers on the left. When it went to right side also I thought I should get my heart checked. Heart was fine. At the time they diagnosed it as radial pain from heartburn. I think maybe it was some beginning symptoms of fibro. This is a weird illness. If they say all your other bloodworm is good, it may be fibro. I always had temp around 97.5. I have felt so hot this past year and at first thought it was curious that my temp is now 98 or 99.
 
Status
Not open for further replies.
Top