Aa
DOES THIS SOUND LIKE FIBRO? PLEASE HELP!!!
Hello everyone,
I've been wandering my way around these forums trying to get some answers. I've been having many concerning symptoms on and off for 1.5 years. I've seen several dr's and no one has dx me with anything yet. I can't keep living like this and am in desperate need of some answers. After much researching I think I may have fibro. My dr is referring me to a rheum. but I haven't got an appt yet.
Here is my story...
Starting in May 07 (2months after birth of child) I started having mild numbness/pinsnneedles in toes/feet. Also around the same time I was getting horrible arm/hand pain (felt like shooting pain). My hands would tingle as well. My neck and shoulders always felt achy and sore (I just assumed this was tension/stress). I also was occasionally dizzy and weak. My feet and legs hurt, and my ears were really achy. And I had horrible twitching (all over my body), and I started having really bad anxiety especially at night.
I saw my dr who referred me to a neuro. After blood work, neuro exam, and MRI's I was told it was not neurological. I was told to see a Rheum. and an ENT (my MRI showed severe sinus disease). I got into the ENT pretty fast. He said my sinuses were very bad and that I should have surgery..
I was sick with these symptoms for 4-5 months. I had good and bad days. The symptoms kinda were up and down. For 1.5 years I felt really well. I did occasionally find that my feet hurt and arms would hurt sometimes, but just kinda ignored it. The anxiety continued on and off, and I coudn't find a cause for it.
Well now 1.5 years later, out of nowhere my toes were mildly numb on left side. Then I began getting the bad arm/hand pain, leg pain, twitching, ears hurt, dizziness (like I'm rocking),pins and needles in arms and hands (especially at night) and very very weak and fatigued. I have no energy at all! My feet are always cold, I feel that i have a bladder infection (but show negative for UTI), and I am very sensitive to loud noise and extremely sensitive to medication (which I read was a sx of fibro) This all happened like that. I ended up seeing a neuro again. And again... normal brain and cspine mri (except showing the sinus disease still), normal xrays, normal ct's. My neuro exam was normal (except have brisk reflexes). So still they don't think it is neurological. So my dr is referring me to a ENT again (for the sinus disease), and a rheum. I don't have an appt yet, but am very anxious to find out what is going on. It is so strange though cause one day i'll feel half way normal and then the next day I'll feel like I got ran over by a truck. It is so up and down.
Also is it common in Fibro to have periods where you are symptom free (like I did for 1.5 years)?
Thank you so much for all your help! I really look forward to hearing what fellow fibro patients have to say!
skarey
I've been wandering my way around these forums trying to get some answers. I've been having many concerning symptoms on and off for 1.5 years. I've seen several dr's and no one has dx me with anything yet. I can't keep living like this and am in desperate need of some answers. After much researching I think I may have fibro. My dr is referring me to a rheum. but I haven't got an appt yet.
Here is my story...
Starting in May 07 (2months after birth of child) I started having mild numbness/pinsnneedles in toes/feet. Also around the same time I was getting horrible arm/hand pain (felt like shooting pain). My hands would tingle as well. My neck and shoulders always felt achy and sore (I just assumed this was tension/stress). I also was occasionally dizzy and weak. My feet and legs hurt, and my ears were really achy. And I had horrible twitching (all over my body), and I started having really bad anxiety especially at night.
I saw my dr who referred me to a neuro. After blood work, neuro exam, and MRI's I was told it was not neurological. I was told to see a Rheum. and an ENT (my MRI showed severe sinus disease). I got into the ENT pretty fast. He said my sinuses were very bad and that I should have surgery..
I was sick with these symptoms for 4-5 months. I had good and bad days. The symptoms kinda were up and down. For 1.5 years I felt really well. I did occasionally find that my feet hurt and arms would hurt sometimes, but just kinda ignored it. The anxiety continued on and off, and I coudn't find a cause for it.
Well now 1.5 years later, out of nowhere my toes were mildly numb on left side. Then I began getting the bad arm/hand pain, leg pain, twitching, ears hurt, dizziness (like I'm rocking),pins and needles in arms and hands (especially at night) and very very weak and fatigued. I have no energy at all! My feet are always cold, I feel that i have a bladder infection (but show negative for UTI), and I am very sensitive to loud noise and extremely sensitive to medication (which I read was a sx of fibro) This all happened like that. I ended up seeing a neuro again. And again... normal brain and cspine mri (except showing the sinus disease still), normal xrays, normal ct's. My neuro exam was normal (except have brisk reflexes). So still they don't think it is neurological. So my dr is referring me to a ENT again (for the sinus disease), and a rheum. I don't have an appt yet, but am very anxious to find out what is going on. It is so strange though cause one day i'll feel half way normal and then the next day I'll feel like I got ran over by a truck. It is so up and down.
Also is it common in Fibro to have periods where you are symptom free (like I did for 1.5 years)?
Thank you so much for all your help! I really look forward to hearing what fellow fibro patients have to say!
skarey
I agree with patsy, it sounds like Lyme Disease. I have been going through the same thing for 1.5 years and was diagnosed with Fibro. and Chronic Fatigue, however I rapidly deteriorated. I just had the Igenex test today, which is the recommended test for Lyme. The problem with Fibro and Chronic Fatigue is that there are often infectious causes which go unrecognized by many doctors. I live in an endemic state for Lyme (Pennsylvania).
Thanks for the comments!
Well I go in to the Rheum. on Fri morning so I'll ask about all these conditions. We live in the UK right now, so I'm not sure how familiar they are with Lymes disease and Lymes testing.
As for rashes go.... yes I have had a come and go rash since all these weird symptoms started 1.5 years ago. However it is always in the same spot. Right below my belly button. When I get it it itches like crazy! It will last a few days and then go away. I get it randomly on and off every now and then.
I've never really figured out what it was, but always thought that maybe I was having an allergic reaction to maybe my pants or belt or something (which is still very well may be). But I never had it until I started having symptoms so it is kinda strange.
No I never got my sinus disease treated yet. I go in on Apr 7 to the ENT and am sure I'll end up having sinus surgery. If all these strange symptoms are from the sinus disease wouldn't it be more steady symptoms, instead of the come and go that I am having?
Anyways I'll keep in touch! Hope everyone is doing well
thanks again!
Well I go in to the Rheum. on Fri morning so I'll ask about all these conditions. We live in the UK right now, so I'm not sure how familiar they are with Lymes disease and Lymes testing.
As for rashes go.... yes I have had a come and go rash since all these weird symptoms started 1.5 years ago. However it is always in the same spot. Right below my belly button. When I get it it itches like crazy! It will last a few days and then go away. I get it randomly on and off every now and then.
I've never really figured out what it was, but always thought that maybe I was having an allergic reaction to maybe my pants or belt or something (which is still very well may be). But I never had it until I started having symptoms so it is kinda strange.
No I never got my sinus disease treated yet. I go in on Apr 7 to the ENT and am sure I'll end up having sinus surgery. If all these strange symptoms are from the sinus disease wouldn't it be more steady symptoms, instead of the come and go that I am having?
Anyways I'll keep in touch! Hope everyone is doing well
thanks again!
Hi... welcome aboard !
I agree with patsy.... you should definitely have lyme disease ruled out. I also wanted to ask you if you had surgery for your chronic sinusitis ? I recently read a research paper on how chronic sinus symptoms can be similiar to Chronic Fatigue Syndrome and cause multiple health issues. If I were you... I would consider ruling out lyme disease, fibromyalgia, Celiac disease, autoimmune issues, B12 deficiency, CFS, chronic sinusitis and chemical sensitivities.
Sounds very much like lyme disease. Do you live in a lyme endemic state? Have you had any weird rashes? A negative lyme test does not rule out lyme disease.
Have an Answer?
You are reading content posted in the Fibromyalgia Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
