The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=24&m=3855828
Posted By : Lilianna Rose - 5/27/2017 6:58 PM
So I have been diagnosed with fibromyalgia for many years. I certainly have a wide array of symptoms that one could attribute to fibromyalgia, including the widespread pain, widespread allodynia, fatigue, brain fog, waking unrefreshed, headaches, depression and cramps in lower abdomen (but I also have PCOS and IBS).

However, I have come to realise that if I take opioids for the pain at night, and strong prescription anti-inflammatories during the day, that pretty much knocks out most of my pain, except for a line of pain going from my outer hip to my interior knee. Even with these meds, if someone touches me, or I cross my legs or make some other physical contact, it will cause me pain, so it is clear that there is still allodynia even on the medications. Also avoiding gluten helps significantly with all the symptoms (I did not find out that I had Celiac till a few years after the fibromyalgia diagnosis). But is it fibromyalgia if the widespread pain and brain fog diminishes 80-85% with a combination of gluten-free diet, opioids at night and anti-inflammatories in the day?

I would like to note that, due to concerns that I might develop an addiction, I restrict the use of opioids to 2 times per week and never one night after the other. The day after a night when I have taken the opioid is significantly better, but the other 5 days of the week, I really struggle.

Paracetamol and antidepressants do not help my pain. Lyrica cut the pain in half when I trialled it, but it caused horrific side effects, including hallucinations, mental breakdown, inability to eat without vomiting and sleeplessness.

I have also noticed that a lot of the pain emanates from my spine. If it is touched in the wrong way or wrong place, the pain comes from there and goes over my whole body, with sensations of knives stabbing me and cobwebs forming under my skin.

I also get a lot of problems with my eyes - floaters, temporarily blurred vision, etc. Many other symptoms of other body parts too, too numerous to name.

Anyway, this is all very confusing and I guess I'm questioning my diagnosis, particularly as they did not do proper testing before diagnosing me. The GP ran a couple blood tests then diagnosed me based on: symptoms, the last 6 months of my life had been traumatic, it started with a terrible flu, and the government needed proof NOW that I was unable to work (and they demanded a diagnosis) otherwise they would cut my pension.
Fibromyalgia, Chronic Fatigue Syndrome, Celiac Disease, Polycystic Ovarian Syndrome, Post-traumatic Stress Disorder, Anxiety, Depression (suspect Bipolar Type II), GERD, Chronic Tonsillitis, Chronic Sinusitis, Multiple Chemical Sensitivity, Multiple Intolerances, Allergic Rhinitis, Lymphocytic Esophagitus, Irritable Bowel Syndrome, Migraines, Scoliosis, Restless Legs Syndrome, Hypotension, etc.

Post Edited (Lilianna Rose) : 5/27/2017 7:17:22 PM (GMT-6)


Posted By : Ljm2014 - 5/28/2017 9:08 AM
Hi,

You could ask for more testing , just to rule other things out.however they can take that too far..so use your own common sense.

I also have the multiple chemical sensitivities, not all with fibromyalgia seem to have that..

I get really ill from perfumes, the chemicals in dryer sheets, newspaper ink..to name a few.

I was feeling better , but took a bad fall last week.. recovering , but impatientšŸ˜Š

Posted By : Sherrine - 5/28/2017 2:05 PM
I think you should see a good board certified rheumatologist and get other illnesses ruled out. Many of your symptoms are the same as not only fibro but also other illnesses...like lupus and Lyme disease. This should have been done in the first place before a diagnosis was given. The treatments for these other illnesses are different than for fibro. Yes, you could still have fibro but I know I would want to know for sure. You want the right treatment.

Also, you can have fibro along with something else. Five years ago my back pain got worse and worse and then I had pain in my hips and intense pain would run down the inside of my legs to the middle of my calves. I got so I barely could walk and I needed two canes to walk. Just lifting my feet an inch to take a tiny step caused intense pain running down my legs. Since fibro isn't considered a progressive illness I headed to a rheumatologist. After blood work, x-rays, and two MRI's I was diagnosed with not only fibro but also ankylosing spondylitis and sacroiliitis! I was put on ibuprofen and a muscle relaxer called Robaxin and now I feel better than I have in Ages. I walk just fine now. The rheumy said I most likely had the AS for years.

We are not doctors here. You really need to find a good doctor you can trust...someone you can work with to help you deal with your pain.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : Lilianna Rose - 5/31/2017 12:56 AM
Thank you, I am trying to get referrals to see specialists but it's very difficult to get a referral (which unfortunately I need to have to be allowed to see a specialist). The specialists I am seeing already cost a lot of money, and I don't have much money to spare.
Fibromyalgia, Chronic Fatigue Syndrome, Celiac Disease, Polycystic Ovarian Syndrome, Post-traumatic Stress Disorder, Anxiety, Depression (suspect Bipolar Type II), GERD, Chronic Tonsillitis, Chronic Sinusitis, Multiple Chemical Sensitivity, Multiple Intolerances, Allergic Rhinitis, Lymphocytic Esophagitus, Irritable Bowel Syndrome, Migraines, Scoliosis, Restless Legs Syndrome, Hypotension, etc.

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer