Fibromyalgia and other wonderful illnesses

[nannythree14]

Hello to everyone! I am posting as nannythree14, but I also go by SpiritBear. I live in the state of Pennsylvania, USA. I have been suffering with pain since 1977. My first job out of nursing school and I was passing meds. Walked into patient's room and slipped on urine. Couldn't see it because the floor tiles were gold. It's been downhill every since. From 1977 to 1984 I was hospitalized every couple of months with severe sciatic pain, hardly could walk, but I still worked. If the State ever walked in and saw a nurse in a wheelchair with her med. cart tied to the back, I would have been long gone. The second injury I incurred was when a psychotic patient threw me against a wall and proceeded to strangle me. It took 5 people to get him off me. Finally in 1984 the orthopedic surgeon decided to do a fusion for stability because he wasn't convinced that there was anything wrong with a disc because it didn't show up on MRI's or CT Scans. Boy was he wrong. I ended up having a Lumbar Laminectomy & Fusion the year before I got married. I planned my wedding from a hospital bed. I was hospitalized for 5 weeks, in a brace for 3 months, and had to learn to walk again. At this time I have 4 more herniated discs, sciatica in both legs- 2 cervical discs and 2 lumbar discs. Thank God for my husband because he has stayed with me every step of the way. We have been married now for 30 years.

I now suffer from Fibromyalgia, Reflexive Sympathetic Dystrophy in both legs and has now spread up into groin. I also have Trigeminal Neuralgia, IBS, GERD, Hiatal Hernia, Duodenal ulcers, Meniere's disease, Aortic Regurgitation (will need open-heart) Orthostatic Hypotension, COPD, Mitral Valve Prolapse. You would think that just one day one of the diseases that cause so much pain, would take a day off. No such luck.

In the past 1-1/2 months I had two craniotomies done because of the trigeminal neuralgia because the first surgeon 12 years ago botched the job big time. And now I will be facing the Gamma Knife surgery (radiation to kill nerve). After that there is nothing left they can do.

So if anyone has any questions regarding other illnesses beside Fibromyalgia and you feel your are not getting the right answers from the docs, please write. Have to go now, dinner is being served.

Hugs to everyone,

SpiritBear

[TheAuthor]

Hi SpiritBear

I am so genuinely sorry to read that you have endured, and are still having to endure, so many trial and tribulations with illness and surgery. I sincerely hope that you can find some resolution and relief to these issues.

I also suffer with many of the same medical afflictions that you suffer with from COPD to GORD (as it is known in the UK). I also have been diagnosed with Chronic Asthma, Costochondritis, Osteoarthritis, Cervical Spondylosis, Osteoporosis, No Coccyx, Migraines and Fibro just to mention the main ones. So I understand how you are suffering and struggling and my heart genuinely and sincerely goes out to you.

It is very kind of you to offer your expertise and assistance to fellow members, and it is greatly appreciated but I would like to draw the members attention to a couple of the Guidelines of FMAUK.HU as pasted below:

1. Members posting on the site should not be assumed to be health professionals

2. In posting about health or medical information outside of your immediate personal experience, show a clear distinction between personal experience or opinion and evidence-based information and be careful to not present information outside of your immediate personal experience as fact unless you can back it up with reputable evidence based information sources.

Members should always be aware that social media platforms are NOT a substitute for medical advice and treatment from a professional practitioner.

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

[nannythree14 in reply to TheAuthor]

Ken

Thank you for taking the time to give me some guidelines. Just let me know if I am crossing any line that I shouldn't. I mentioned that I was a nurse for 30 years and that is true, but being disabled I no longer hold a license. I was also a Certified Medical Assistant and Instructor, and a Chiropractic Assistant. But whatever comments I make are definitely about me and my opinions. But if anyone out there does need to ask questions about Fibromyalgia, I hope that the answers I give are considered as my opinions, hopes, and dreams, and whatever research I do, is for my benefit primarily, but if someone wants to know about a new symptom or treatment that is new, I will direct them to that website.

Thanks Ken for the advice; I truly appreciate it. Besides my poor husband, I have only one friend I can talk to who understands what I am feeling. So I am thankful that I found your site.

Best regards,

SpiritBear

(I also have costalchondritis like you and Adrenal Gland Insufficiency)

[Heliboy911]

So sorry to hear of all of your health problems. Do you have many problems with help paying for your medications ?? A huge amount of people here in the UK take advantage of the brilliant services we have in the NHS and sadly that is now having a huge impact on the way they are able to operate and God willing it will survive the current problems, but we are so lucky in that we are able to enter any of the multi million pound hospitals 24/7 365 days a year with no appointment and be seen and treated by marvellous hospital staff within 4 hours.

I am well aware of the health care system you have in the US and it is sad that you can not adopt the same system we have here in the UK as this would in my opinion help to ease a lot of pain and suffering to those Americans who do not or cannot afford healthcare.

I wish you well in your life.

[nannythree14 in reply to Heliboy911]

Thank you. Yes I do have problems with medication needs. Now that I am older and the medical problems have increased two fold, the more medications I need, I end up doing without certain meds. like cholestrol for a week or two before filling it. When I worked I had coverage as did my husband. His would pick up what mine didn't. Now I am on Medicare Disability and they don't pay for my meds. unless I happen to be in the hospital.

As for the doctors in my area they are pathetic. I used to live in Connecticut and had great doctors. Since we moved here it's like looking for a needle a haystack. Back in 2009 - 2010 I had to have knee replacements (yup, both knees). I was seen by five different orthopedic groups and every single one of them refused to treat me because of my RSD. I ended up going to the Cleveland Clinic in Ohio which is a 9 hour drive one way. They have treated hundreds of patients with RSD without a problem.

Two years ago I was found unconcious on the floor for 15 hours. By the time they got me to the ER I had less then 15 minutes before I was on a slab in the morgue. This was all because Pain Management gave me enough drugs to kill a horse. This doctor was giving me high dosages of Lyrica, Methadone, Dilantin, Oxycontin and Oxycodone, just to name a few. He never discontinued a medication, just added to it. I was up to 72 pills a day! He never did bloodwork, x-rays, MRI's, or CT Scans. In fact the only time I saw him was when I first went to him, and about once a year for 4 years. I mainly saw Physician's Assistants or Nurse Practioners. Then on Aug 13th 2013 everything hit the fan. The drugs had built up so much that my kidneys took a really bad hit. I was hospitalized for 3 weeks, and I have no memory of it. They say I never will. My biggest mistake was not investigating him thoroughly. If I had I would never have gone to him. Some of his patients died, some ended up in nursing homes. He has had charges brought against him numerous times and he still has his license to practice!

Thanks for getting in touch and your good wishes. Take care of yourself.

SpiritBear

[Heliboy911 in reply to nannythree14]

And the same to you Hugs and stuff from London UK