Barely Hanging in There

[magnum]

Hi,
I'm new to this forum and I'm not used to sharing details of my fibro with others outside of my family. I am at my breaking point physically and mentally after living with this hellish disease since 1998. In the past, I would have flare-ups especially when temperatures go down, after over-extending myself physically, and after having had a cold/flu. For the past 18 years, the major pain areas were: neck, shoulders, elbows, hips, bottoms of feet, and knees. I would also have burning sensation in legs, feet and hands. Tested negative for MS and Lupus. I also have narcolepsy, depression along with profound hearing loss in both ears. (I now have cochlear implants). Fighting pain and fatigue every day has worn me down so much. I felt like a 40 year old woman in a 70 year old body. Fatigue affected me 70% of the time. When I could, I would lay down to go to sleep so I don't have to feel anything. I feel very, very sorry for my family (husband and 3 kids age range 12-16). Basically, I've lost 18 years to a horrid existence. I absolutely empathize with other Fibromyalgia sufferers.

Last year, I went back to work after raising my children. We need the extra money. In my retail job,the physical exertion was hard at first running around helping customers in a huge store. But I handled it okay for about 11 months.

Right now, I've crashed and burned. The pain flare-up has been ongoing since early September and has gotten worse! Now, I can't bend my fingers, lift my arms over my head, or use my elbows to lift anything. Walking is excruciating- bottoms of feet hurt and my knees ache. My neck and shoulders are screaming.I feel weak all over. I get bad headaches all the time which I didn't use to. Bright lights and noises agitate me. My appetite is gone. I only drink my meals. Fatigue is almost 100% of the time. Major depression with suicidal thoughts. Nothing interests me anymore. I've taken muscle relaxants, pain relievers, anti-depressants, Vitamin D3. Nothing is pulling me out of this rut. I am having to take time off work which doesn't help my job security any.

I was really hesitant to write about this due to fear of coming across as a "whiner". However, I really needed to get this off my chest. I am serious in that I am at my breaking point. I miss my family a lot.

I'm trying to figure out what's making this even worse. Thoughts come to mind such as Adrenal Gland Fatigue, low estrogen levels due to perimenopause, Polymyalgia Rheumatica, bad diet, sleep apnea.... Seeing a rheumatologist next week. Also, I set up a appointment to see a specialist at a Fibromyalgia treatment center near Denver.

Does anyone have ideas or suggestions of where I can turn for help? Thank you to the Fibromyalgia Forum and Support Group for being there for all of us.

 

[DK_engineer]

hi magnum, welcome
You've had a very difficult time, please don't worry about coming across as a whiner, we all understand. People regularly vent here - it's a very human need to be heard and understood.

A couple things I have found helpful that are not on your list...

Exercising in a pool - it can be swimming, aqua jogging or just hanging out in the water. It is amazing to me how much this helps.

Supplementing with resveritrol + rice bran oil - I take a resveritrol pill every morning. When I feel the pain building up, I take a spoonful of rice bran oil. I usually feel better in about half an hour. These are both strong antioxidants, and together they have a synergistic effect.

I hope this helps!

 

[magnum]

Thank you, DK_Engineer, for your kind words. I was not aware of the anti oxidant properties of resveritrol and rice bran oil. I will go buy some today and try it! As for water therapy, our rec center has a hot tub and a river walking pool. When I've done the river walking, I noticed it takes quite a bit of energy. It may be good for me to do a little at a time to get some exercise w/o over exerting. It means a lot to me to get a message from someone who's been there.

 

[DK_engineer]

Wow, I am jealous of your pool!
Ours is a lot more basic

I started out slow. I'd go during public swim, and just paddle around a bit. I stopped when I felt too tired or sharp pains. Eventually I worked my way up to swimming laps.

It was very frustrating because just a week prior to the big flare up that led to my diagnosis, I had been quite active, playing indoor soccer and jogging. I have been recovering some of what I lost slowly. I've had to adjust my expectations to fit reality though... I guess slow and steady wins the race.

Welcome again - I've met a lot of friendly people here. I hope you do too

 

[magnum]

Hi DK,
Funny about the pool - I just wish it was mine LOL

I am sorry to hear how FM had affected your activity level when you used to play soccer and jog. Man, that's rough.

You were smart to get help so soon after receiving the diagnosis. I believe that at this time, there are a lot more avenues to pursue for pain relief and mitigation of symptoms.

I was diagnosed in 1998. At that time, I spend a year going to rheumatologists and neurologists before receiving the official diagnosis. The diagnosing rheumatologist threw up her hands and said there was nothing more she could do. The prevalent thinking at the time from the public and medical community was "it's all in your head" and "you're just depressed." I even had a neurologist write me off as "just anxious" when I could barely walk. Jerk.

But now, there is more respect from physicians and the general public. I think it goes a long way in helping us get the resources we need to deal with this life altering condition.

Thanks again for your reply and I wish all of us FM patients well.

 

[DK_engineer]

I'm sorry you had to go through all that. It just makes everything worse.

I feel pretty lucky that I was diagnosed after fMRI established that central sensitization exists. When I was a new engineer (back in the 90's), one of the lab technicians where I worked had been diagnosed with fibromyalgia. Her case was probably caused as a result of exposure to very shoddy breast implants after being treated for cancer. She had to really struggle for respect. She was involved in a class action suit against the makers of the implants. One judge in particular was very rude and dismissive of her. But she didn't give up. The good news is that she won a settlement and was able to retire a little earlier (and buy a new car).

 

[Heavenjumper]

Welcome, never fear sounding like you're whining here. This is a great group of people that understand the difficulties of dealing with the effects of this disease. I was only diagnosed recently, but have a family member that was diagnosed back in the 90's and I know she went through many doctors that told her it was all in her head and that crushed her. It's heart breaking to have doctors dismiss what you're going through, and I've dealt with a little of that even in my short time dealing with fibro. I hope you find this group as helpful as I have.

 

[Annett]

Hi,

I had a lot of the symptoms that you have for about 15 years. I wanted to die at the time. I had chronic fatigue, fever, exhaustion etc almost all of the time. I finally figured out how to heal myself. It was a combination of getting to the root cause of the emotions and trauma from the past & supporting the physical body to heal itself. The body is just expressing what we have going on inside. Getting off of sugar, wheat and junk food and taking colloidal silver to clear candida and I was like a new person. The physical part was important but almost more important was the emotional part helping me to let go of it all. I had to stop identifying with being sick. I got off all anti depressants, etc and don't have any symptoms anymore. Now that I'm free of it I help other people do the same. There is a way out, let me know if I can help. Annett

 

[magnum]

@DK_Engineer- Gosh, the lab technician you worked with sure got a double whammy with breast cancer and fibromyalgia. I am so glad she got a good settlement despite the rude judge. I have to tell you that when you mentioned she was a lab technician that was exposed to shoddy breast implants and developed FM, I went on high alert. I am a chemist and was working in a lab when I developed FM. As a matter of fact, I had a direct exposure to a neurotoxin that I had been working with for 1.5 years. I had acetontrile gloves and glasses on for protection. However, one day, the solution splashed onto my left wrist and left a burn. That very same day, everything went to hell in a handbasket. All the symptoms matched the warnings on the MSDS and lasted for a week. FM started up after that.I find it to be more than coincidence. I just wondered if your co-worker had been working with toxic substances and the breast implants pushed her over the edge. I've been trying out the Resveritrol plus rice bran oil for my pain. For three days now, I've taken 500mg Resveritrol plus 2 Tbsp rice brain oil in the morning. It seems to be helping especially w/ the pain in the bottoms of my feet and neck/shoulder pain. I would say that the pain level went from 10/10 to 7/10. I am going keep up with the regimen and thank you from the bottom of my heart for this crucial advice. I hope that you are doing okay considering the weather is getting colder. It's a good thing that pools are heated, right?

 

[magnum]

Welcome, never fear sounding like you're whining here. This is a great group of people that understand the difficulties of dealing with the effects of this disease. I was only diagnosed recently, but have a family member that was diagnosed back in the 90's and I know she went through many doctors that told her it was all in her head and that crushed her. It's heart breaking to have doctors dismiss what you're going through, and I've dealt with a little of that even in my short time dealing with fibro. I hope you find this group as helpful as I have.

@Heavenjumper, thank you so much for your support and encouragement. I am so sorry that you were diagnosed with FM. It sucks! Your aunt sure went through a lot in the process of getting diagnosed. I really hope those same doctors feel shame today after having told her "it is all in your head" and causing her distress. Doctors need to take a step back and think this through logically. "Does a patient really want to visit doctor after doctor, sit in waiting rooms, deal with the poking and prodding, enduring weekly blood draws and spend countless dollars all just for fun?" I imagine your aunt has a lot of good advice and experience to share with you during your journey of learning and healing.

 

[magnum]

Hi,

I had a lot of the symptoms that you have for about 15 years. I wanted to die at the time. I had chronic fatigue, fever, exhaustion etc almost all of the time. I finally figured out how to heal myself. It was a combination of getting to the root cause of the emotions and trauma from the past & supporting the physical body to heal itself. The body is just expressing what we have going on inside. Getting off of sugar, wheat and junk food and taking colloidal silver to clear candida and I was like a new person. The physical part was important but almost more important was the emotional part helping me to let go of it all. I had to stop identifying with being sick. I got off all anti depressants, etc and don't have any symptoms anymore. Now that I'm free of it I help other people do the same. There is a way out, let me know if I can help. Annett

Hi Annett,
I hear you! 15 years is a long time dealing with FM. That's great that you figured out solutions to pull yourself out of the FM rut. I didn't realize FM is a manifestation of inner turmoil. I am taking your advice about getting off the wheat, sugar and garbage food. I also cut out products that contain aspartame. Before my huge crash in September '16, I'd been drinking Diet Cokes like there was no tomorrow. My workplace environment was running at 90 degrees during the summer indoors. I was bad about just drinking plain water. I really think aspartame is a large contributing factor in the deep rut I've fallen into. I've never heard of colloidal silver being used to clear candida overgrowth. I'll have to do some reading up on that. Thank you so much for letting me know of this. Your kind words and advice are very helpful!
BTW, I noticed you're from White Rock, B.C. I grew up in Washington State and would visit B.C. frequently (back in the good old days when you didn't have to have a passport). British Columbia, in my opinion, is one of the most beautiful natural areas in the world. Lucky you!

 

[DK_engineer]

Wow, that sounds like a bad exposure you had there. Was the chemical a chronic toxin? Those are the ones that worry me - you don't realize they are affecting you until it is too late.

The technician I knew tested the physical strength of paper, so I think the cause was primarily the implants. The implants had a kind of foam that broke down in the body, and the way hers were physically constructed, they were the worst of the worst. There were some chemicals around from the paper plant, but they mostly tended to be the kind that would hurt you right away. I don't think she was out in the plant that much.

I'm really glad the resveritrol and rice bran oil are helping a bit