10 Years of Suffering - Could it be Fibro

Mike_jax
hello and welcome. My first question is have you seen a Rheumatologist? Also, what kind of tests have they done.have you had complete blood panels to rule out things such as rheumatoid arthritis or lupus or Ms or even Lyme disease? you definitely need to have all of these ruled out before a diagnosis of fibromyalgia is given.

fibromyalgia is characterized by pain in all four quadrants of your body. top half bottom half left side and right side. a board-certified Rheumatologist is the person to see they deal with this everyday. you very well could have fibromyalgia but again we are not doctors and don't know for sure.

if you haven't yet please read fibro 101 the first thread on the forum, it is chalked full of great info.

please give us more detail on what's going on with you what test you had and etc. we will never tell you to see a psychiatrist or that it's all in your head because we know all too well of how terrible this can make you feel at times.

looking forward to hear more from you hang in there and take care
Michael

After reading those intro articles it appears that I don't have fibro. I don't get constant pain in parts of my body. The only constant physical symptom is the twitching, stretching, pressure sensation that I get all over my face, in my nose, between the eyes and in my gums. As I said this is triggered by what I eat mostly. And any chemicals like toothpaste or shaving foam.

However, I really do get most of those symptoms on the intro list. From the tinnitus to the personality changes.

I'm usually fine at exercises. But it all depends on my diet. If I eat really bad things, exercise can be very uncomfortable. But if I stick to my safe diet, exercise can actually be helpful and make me feel better.

I don't get constant pain in other parts of my body. My ankle sprains all the time, my joints ache really easily in certain positions. For example my shoulder aches when I hold my arms up for a minute or two, and my jaw aches when I open it wide for the dentist after just 30 seconds.

Pain in the rib cage is something that I do suffer from, but it is very irregular. I've had to go to hospital twice in 10 years when it got bad. But normally it doesn't last very long. I'm not affected by this system overall.

The physical pain isn't my biggest problem, although since I get injured so easily I can't do sport.

Post Edited (Mike_Jax) : 3/2/2015 9:08:39 AM (GMT-7)

Hi Firefly,

I definitely have some kind of fog and I hate it. My memory at times is awful. Fortunately I can control the severity of my problem by restricting my diet to those 4 things. It gets awfully boring, though.

As for CRPS, the NHS website indicates the main symptom is debilitating pain http://www.nhs.uk/Conditions/Complex-Regional-Pain-Syndrome/Pages/Symptoms.aspx Fortunately, I don't get a lot of physical pain. Occasionally I do, like the bottom of my feet hurt when I walk or my leg just aches. But I can work around these minor pains. Other people can't even tell I'm in discomfort.

I started looking through the list last night, but my I just could not read properly and absorb information. I'll have another go now.

Interesting thoughs, Jenni. Thankyou.

I think I'm going to start using IBS as my public excuse as to why I cannot attend lunch with my colleagues and friends etc.

Bowel discomfort is a massive part of my problem. I have massively inconsistent bowel movements. The strangest thing, is that when I stop eating foods that make me bad, my bowel movements start to get loose and a slime comes out.

The slime is like orange and green. And when it comes out I feel so much better.

The problem is that I don't understand how IBS could be related to my sinus symptoms or the pressure in my face. I don't understand why it would make me sensitive to vitamins and minerals like calcium, or chemicals like toothpaste. Also, when my diet is very bad I get rashes on my hands. I don't understand how IBS could cause that.

I just can't find one person who is anything like me. And maybe I never will. Maybe there is someone else with this problem who cannot work out what is causing their problems. It took me about 8 years to work out my safe diet is just chicken, rice, oats and soya milk. Before that I felt so bad all the time it was hard to work out what was causing the problem.

Anyway, to summarize, thankyou Jenni for your suggestions. If you have any more ideas please let me know. I've decided to see yet another new doctor next week and I'll run all the suggestions past them.

Mike -

I know how hard it is when things are going wrong and you can't find a source. The IBS is a good excuse - most people have heard of it now. When I started 10-15 years ago, it was new and people were less understanding.

A lot of us have weird auxiliary symptoms for no reason. I have chronic sinus. It's currently being relieved by Massage therapy. They call it Cranial Sacral therapy. The whole things sounds like Science Fiction, but I trust my massage therapist more than anyone else I work with. I used to go through a pack of Sudafed a month. I am now on the same pack I bought last August. I still need it a bit, but she balanced everything with this. If you look it up there is a link to it out there. Apparently it balances all the body systems and is based on pressure points. It doesn't really involve massage - just holding different sections on your head or feet or other areas. I'm becoming a fan. As soon as the cold weather passes, I told my massage therapist I would try whatever and forgo the regular massage for a bit. She's trying this out on a few of her chronic cases (like me :) )

The thing with all of this is that I'm finding different people recognize different little pieces of whatever you are dealing with and everyone here seems willing to help and suggest.

The rash thing is ringing a bell. A couple of spots with suggestions:

http://www.uptodate.com/contents/skin-and-eye-manifestations-of-inflammatory-bowel-disease
http://www.medicalnewstoday.com/articles/37063.php

Good luck, either way. I'm headed back to the doc to see why mine went off the charts the last few days.

Oh! Just saw the red itchy comment -- that too can be your toothpaste allergy!

Here is a summary of my problems in case that makes it easier for anyone to piece everything together.

Symptoms Overview
These are the most prevalent and important symptoms. They are affected by exposure to triggers which are listed next.

Cognitive
- Headaches
- Irritability
- Inability to think clearly or concentrate
- Extreme to mild fatigue (mental and physical at the same time)
- Rushed thinking

Physical
- Head, Face, & Eyes
- Ringing ears / tinnitus
- visual flashes, objects that arent there (usually edges of objects)
- sensitivity to light (have to squint eyes to look at monitor or tv)
- Facial pressure / stretching / crawling / melting sensations

Sinus & Dental
- Pain/throbbing in my teeth / gums / roof of mouth (that moves around)
- Tartar on teeth
- Lump in roof of mouth
- Continually coughing up mucus every day
- Mild sore throat feeling (although not really sore)

Skin, Muscles, Bones, & Joints
- Shakes (not often)
- joint strains, injuries, aches, pains (knees, inner shoulders, left ankle)
- Rashes on hands
- Persistent itchy red spots on feet
- Twitches (legs, arms, muscle on chest) & Tremors
- morning muscle stiffness
- pins and needles when lying down and raising arms for more than a couple of minutes

Digestive
- Stomach / gut / digestive discomfort (relieved by BM)
- Flatulence
- Inconsistent bowel movements
- Mucus in bowel movements (orange / green - sometimes like seaweed) - has a bleach smell

Other
- Flu-like symptoms (usually as a sign I'm getting better)
- Chest pain (rare) & increased heart rate, and slight difficulty breathing
- Night sweats
- Extreme temperature sensitivity (that people often comment on), inc. cold hands
- Pain after ejaculation or urination (if not spaced out)

Triggers Overview

99.9999% Certain Triggers
- Calcium (foods & supplements)
- Magnesium (food & supplements)
- Vitamin A (foods and supplements)
- Vitamin K (foods and supplements)
- All alcohol (even a small shot of whisky or vodka)

Unisolated Triggers
I know these compounds exacerbate my problems, but I am unsure what the exact trigger is

- Chemicals (toothpaste, hand washes, shampoo, etc)
- Medication (anti-histamines, painkillers, headache tables, sinus decongestants)
- Fruits (possible vitamin A but symptoms *feel* different to other Vitamin A food sources)
- Some beds and mattresses (memory foam mattress and pillows are extremely bad)
- London Underground

Suspected Triggers
- Polypropylene (material used in anti-allergy pillows)

Post Edited (Mike_Jax) : 3/5/2015 1:19:15 AM (GMT-7)

Hi Mike, I didn't read all the posts after yours...but I have a few thoughts. The irritability, inability to concentrate and rushed thinking could be ADHD.

I'm wondering about myofacial pain syndrome and multiple chemical sensitivity for part of the other symptoms.

My guess is that you have several things going on here. Good luck to you!

Hi Ashaline,

No. I don't recall ever being tested for Lupus. I will mention that to my new doctor this week and see if I can be tested for it.

Thankyou

Hi Mike:

Welcome.

I have some of the symptoms that you do. I have had headaches that will not go away for 13 years. I have head pain every day. When chronic pain began I was at work. I was looking down reading and began to get pressure in my head. It was like someone was blowing something into my head. I then began a number of x-rays, CT Scans and MRIs.

When indicating where the pain is on diagrams of the body, I mark my neck, base of my skull, up my head and on both sides right at the top and sometimes into my forehead. At first the pain in my forehead was spared. I tell Doctors that the pain is above the roof of my mouth and under the nose. I get pushing feeling into my jaw and much tightness.

I have been told different things by Doctors. One who specializes in Headaches said I have combination headaches. I sometimes get pain in my eye. Some is sinus issues. A Dentist at a Hospital told me the jaw pain is from Neuralgia. Migraines and sinus issues can impact the Trigeminal Nerve. I use a product called Neil Med, to rinse my sinuses once a day. I also use an Allergy rinse, bought over the counter, that keeps the sinuses clean. I purchase the allergy rinse if I need to be away from home for any reason. The Neil Med product does require the use of boiled water and keeping the bottle clean. I put it in the microwave before use to disinfect. I am often rinsing out green mucous with blood attached. Often it happens after a virus.

I, too, feel there is a connection between your stomach and head. I was born with a bad stomach. I still have I.B. Part is the after effects of an infection with C. Diff. It is possible that medication I took to treat the C. Diff. has caused nerve damage. Sometimes I connect the muscles in my head tightening up when I am having constipation. Perhaps my muscles are trying to protect my brain from toxins in my stomach. When I get a pain just above my left breast it is caused by something not right in my stomach. The pain stops when my bowels clear out.

Oddly, you believe that the supplements may be causing some of your symptoms. I have found Magnesium to be a help for my stomach. I have been using Magnesium Glycinate for a few years. I can alternate with Magnesium Taurate. Have also used a product called "Natural Calm". I am now trying a brand with malic acid. Magnesium is used for many of the bodies functions. Have you seen an Allergist or a Naturopathic Doctor? I myself have not seen either, just wondering if you have.

I have Osteoarthritis in my neck. That is contributing to my headaches. There are over a 100 types of arthritis. Have your Doctors looked for Arthritis?

For me my most horrible problem is chronic pain.

Take care.

Loring

Osteoarthritis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...

Hi Loring,

We do have many things in common, although lots of different ones too. I'm lucky in that the physical pain is not my worst symptom, so I can go to work and do my job and try to hide my cognitive impairments.

I'm also lucky in that I can heavily-mitigate the worst of my symptoms by following a very restricted diet of just a few things. Does diet affect your symptoms that you know of?

Magnesium is definitely a problem for me. Most recently I tried magnesium citrate, which immediately set my face twitching and pressure on my nose.

I've tried many supplements and medications and they all make me worse - usually instantly. This weekend I tried malic acid and then high quality fish oil with lemon flavouring. Both of them appear to have made me worse, although it's not always easy to tell. Sometimes triggers will make my symptoms get a little better before getting worse.

I have used neil-med, and I think it made me worse. I used in phases over the past 8 years and each time it causes my voice to go hoarse. Perhaps the saline solution is part of it. I've also tried a nasal sauna. I think that makes my symptoms worse too. But sometimes it makes them a bit better.

I've seen the best NHS allergist in London who could find not a single thing wrong with me after 3 or 4 visits. Haven't seen a naturopath. I may try one day though.

Trigeminal neuralgia was dismissed by my doctor because it happens on both sides of my face. She says it only happens on one side. Not aware of athritis being looked into. My muscles and joints are the biggest problems.

My Sinuses have been problematic over the years. There's an object in my gums where I had a root canal. Twice they tried and failed to remove it. I also have a lump in the roof of mouth, which they were quick to dismiss, even though they couldn't explain.

Mike

Hi mike,
Don't ever loose hope. I have lupus, sarcoidosis, fibro, chronic fatigue, hypothyroid, ibs, and more. I know how difficult it is when you a lot of symptoms from different systems of the body. I think it would be a good idea to rule out lupus and MS. Your symptoms are legitimate and real. I have neuropathic itching. I will itch (which can be tormenting) without an allergic cause. Therefore, benadryl and other anti-histimines won't work. I have never gotten a diagnosis but my doctors say that they think I have neuropathic itching. I hope you find relief soon.