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KimT

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I wasn't sure if I would post this at all. After deciding I had no idea where to post it but, for me, it feels like a rant/complaint so here it is.

Since my diagnosis I've always believed that I should take good care of my general health, get some good sun each day possible, get some light exercise, correct vitamin and mineral deficiencies and eat pretty clean. Really not much different than how I was living before the diagnosis.

I already had some pre-existing conditions including: depression which was medically managed for over 10 years, GERD which was also managed by diet and a PPI, a pretty benign heart arrhythmia which was medically managed for over 20 years, and a tendency toward gastritis if I didn't watch what I ate. I also had been diagnosed with Meniere's but later my neurologist and ENT said it was non-specific dizziness and vertigo episodes without hearing loss. All of these didn't affect my work, my extreme exercise/sports goals or my life, in general, except I stopped scuba diving and going on cruises after the vertigo episodes/constant dizziness started (2002). I've had things that athletes get like torn rotator cuffs but nothing that kept me down for more than a few days. I just took it easy until my body healed.

About six months after my diagnosis I developed very bad back pain. It was so bad I went out and bought a lift chair because the bed was the only place I felt comfortable. I went on Oxy for a few months and the pain gradually went away. By then I was only walking about a mile each day but was relatively pain free. Then I sprained my right ankle badly, in the middle of moving and evacuating for a hurricane. I kept walking on it and it got very bad so I was in a wheelchair and my lift chair for a few months. Gradually I got back up and started walking a little each day and started going in the pool several days a week. I worked my way back up to doing 1/2 mile on the treadmill and another 45 minutes in the pool on most days. I felt pretty good. That was last Summer. In February I couldn't walk fast enough on the treadmill to raise my heart rate so I inclined it. I think between that and sitting on my noodle in the pool making a peddling motion did something to my knee, the miniscus, or the tendons/ligaments in that area. It worsened. My neuro at Mayo thought it might be fibromyalgia. The rheumy thought it was structural. The Orthopedist saw the negative MRI, wasn't sure, so he did Xrays of both knees and said they were structurally perfect. He shot me up with a steroid and ordered PT. The steroid did nothing but the PT helped a little. I can still stand on that one leg and even raise up on my toes. If I wanted to endure the pain I could squat and get back up again (not easy but I could do it.) I can only walk about 30 feet without the intense pain in my knee area starting up so I now limp (this was the good leg but also the leg with the sprained ankle.) The last dozen times I went in the pool I hardly used my legs and relied mostly on my arms so now my torn rotator cuff is in bad shape once again. So back I go for a shot in a few weeks.

Had two crowns that needed replacing. One done, one to go.

Had flexible scope to laser hemorrhoids (3) and view an anal fissure. After care was to increase fiber (I already eat about 30-40 grams a day and take psyllium with plenty of water daily. I added a stool softener. At first I thought it was working. Then the fissure started bleeding again and now bleeds daily no matter what. Back to gastro on Monday with probable referral to proctologist. Gastro said I'd probably end up with surgery because now he believes there is more than one fissure and it is chronic. All I know is that it feels like I'm pooping glass, even when it's extremely soft and no straining. Thank goodness for the bidet. I wasn't using it before but I am now. For months I thought the constipation from Remeron was causing hemorrhoids but the doctor said the pain and spasms were coming from the fissure. The miralax does soften the stool but too much makes me dizzy. I thought it was just the vestibular thing but I looked it up and, sure enough, it was a side effect.

The one thing in my favor is that I am still breathing pretty good and moving a lot of air. There is no worry about knocking me out for the upcoming procedure and I did fine being knocked out for the last one.

If you've read this far, you must be bored. The thing that bothers me the most is none of the doctors can agree on why I'm in so much pain. Joints, muscles, rectum, headaches (the tension kind), back, etc.

Latest blood work shows my TSH back down to 1.6 (from 6, thanks to the iodine) and my ferritin is finally normal at 25 but my total iron is very high normal. Doesn't matter, my blood work was good. I'll probably do another vitamin and mineral test before year end and another ABG but my ABG three years in a row have been very good.

I cut off on all supplements and started to introduce one at a time (starting with the curcumin. I even went off the cannabis to see if it is really working. It's only been a couple of days but I'll see. I did have much more vivid dreams without it.

For the first time in two years, I got exhausted playing cards today. I haven't had to take naps yet but took two in the past week.

I think the stress of my brother and his wife being back in the area is part of my exhaustion. I love Christmas but planned a party for 16 so I'm just hoping I can rest up and pull it off. I have several great friends in the condo and they all want to help me prepare. One is driving to Winter Park to pick up my order from Whole Foods.

I'll stop now.
 

swalker

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Kim, I am sorry to read you are going through all these issues. I know you have been proactive about taking care of yourself and am glad you have.

The wonderful news is that your breathing is good. I was very encouraged to read that.

I sure wish you did not have the pain you have. I think you have said you have seen a pain specialist, but if you have not, you might want to consider visiting one.

I envy you having a Christmas party for 16. That sounds wonderful, though certainly will be tiring. Glad to see you have friends that can help out!

Steve
 

ShiftKicker

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If you've read this far, you must be bored
Nope- sympathetic. And saddened that despite your taking absolutely exemplary care of yourself, making well informed and thoughtful decisions about what to put in your body, being mindful and just trying SO HARD, you're being hit with a whole host of other health issues on top of the burden of ALS. That sucks.

Be wary of eliminating something that may be helping with spasticity and inflammation(cannabis). Some effects of spasticity are sometimes subtle and will absolutely add to your fatigue and pain- even if there doesn't seem to be direct correlation- and it could creep up on you. If you're pushing yourself over the Christmas season and need energy to host a party, could you hold off on making changes to your meds till after?

Kim, so sorry this has been so present and such a constant in the past year or so. It must make it so hard to find those small periods of time where you forget about your health- there's always a reminder with that constant pain.
 

lgelb

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Wow, Kim, if I were planning a party for 16, I would be exhausted just thinking about that, let alone the rest of your life!

Have you tried A&D ointment on the fissure? Just a note that curcumin can contribute to bleeds.

I don't even play a doc on TV, but I would question the strategy of adding bulk and then softening stool. I would go for smaller stools, full stop. It sounds like you are heading toward a procedure anyway, but just my 2 pennies.

Best,
Laurie
 

KarenNWendyn

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Kim, I read your rant and was not bored. I know how hard you work at taking care of yourself and how frustrating this must be. It sounds like you do have chronic widespread pain and likely do meet many of the criteria for fibromyalgia.

I’m going to throw in my opinion here about fibromyalgia, having worked with fibromyalgia patients for over 25 years as a rheumatologist.

Fibromyalgia can come on anytime in life (though is rare in children), and we see a lot of it mixed in with other musculoskeletal problems. It’s very common for someone with osteoarthritis, rheumatoid arthritis, systemic lupus, or chronic injuries, for example, to develop fibromyalgia. It may also be a common comorbidity for a variety of neurological conditions.

I think it’s very likely that when someone gets long term pain for whatever reason, neurotransmitters go haywire, and the nervous system lays down more pain pathways. Unfortunately, pain seems to beget more pain.

Fibromyalgia manifests as chronic widespread pain. It is non-inflammatory pain. People with classic fibromyalgia also have non-restorative sleep, fatigue, soft tissue tender points, and hypersensitivity to touch, odors, and noise. Their response to these stimuli is exaggerated, raising the idea that fibromyalgia may represent one end of a normal sensory spectrum we all experience. It’s possible that genetic and other factors may affect one’s threshold to pain which is why some people are more susceptible to fibromyalgia.

Fibromyalgia tends to magnify pain from other sources. For example, someone with fibromyalgia who gets an injury, an infection, a headache, or has surgery often has an intensification of their underlying pain, more fatigue, and a prolonged recovery.

Unfortunately there is no cure or easy solution to fibromyalgia. Pain management still needs to come a long way.
 

KimT

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Karen,

You are describing me perfectly. I used to have a very high threshold for pain. Now I need a topical numbing cream just to get my teeth cleaned. The neuromuscular doctor at Mayo was certain it was fibromyalgia. He was young and smart and did a thorough examination.

He sent me to the rheumy at Mayo to rule out autoimmune diseases since my family has tons of them and my ANA is always positive. The rheumy at Mayo said he was sure the positive ANA was from Hashimoto's, which I've had for over 10 years, and said I didn't meet the criteria for fibromyalgia. He never asked me about the sensory stuff. I cannot tolerate perfume, smoke, or other fragrances. Sometimes food cooking bothers me. My hearing is like a dog's. When more than one person is talking, it sounds like a crowd screaming and, sometimes, seems to scramble my brain. My local neurologist has always said I had fibromyalgia, since my auto accident in 2000.

Mayo Clinic keeps good records. I looked back on their portal to see if I could connect any dots. When I was examined for the heart arrhythmia in 1998, hoping for an ablation, I was referred to a rheumatologist (I didn't remember this) and the notes said back pain, neck pain, and widespread non-specific pain. After reading every note from every doctor and looking at every test they discovered that I wasn't digesting fat and immediately worried about my pancreas. That was found normal. They couldn't do the ablation because the pathway was too close to my phrenic nerve (thankfully they didn't try) and it was only SVT so they weren't worried. It took me several months to get back over 100 pounds and when I started Remeron I easily gained another 10 pounds. By then the pain was gone completely, except for my neck and I suspect my job had a lot to do with it the lingering neck pain.

Sometimes I wonder if depression has slowly come on again causing physical manifestations but I don't feel depressed, at least not the way I felt before.

Laurie, I know you mentioned central pain sensitization way back (it's called different names by different doctors) and that is supported by Karen's experience treating fibro patients. I honestly believe I do have fibro and it has developed into extreme sensitivity to pain. Also, point taken about the various supplements that thin blood. My gastro guy wants me back in Monday so I'll discuss this with him. I did stop the fish oil and I do notice a difference in my mood plus I'm getting way more heart palpitations. Maybe coincidence? I guess I won't know until I start taking it again. I'm also having much more fasciculations and cramps since I stopped my supplements.

Fiona, you posted my exact fears. I would hate to go off something that is helping. Also I worry about going off prescribed drugs and then not having them work again. I know giving up Remeron would probably solve constipation but I've tried every antidepressant out there and nothing else works without giving me unbearable side effects. With my family history none of the doctors have recommended going off that drug. Plus it keeps me hungry and puts me to sleep.

I used to push through the pain during sports. Now I flinch from walking or reaching for a glass.

Steve, I saw a pain management doctor at Mayo in January 2016 because of the sudden back pain. He recommended their three-week pain management program but I would have had to live in Jacksonville for three weeks and most of the things they would be doing I was already doing (massage, meditation, PT, cognitive therapy, etc.)

I often believe that when ALS is diagnosed, some doctors don't dig deep enough when other things pop up. I can only say if these "other things" were gone, I'd be traveling, doing much more, and feeling much better. The lingering question is how much of this is ALS and how much of it is "other." That question may never be answered.

Thank you all so very much for the feedback and concern.
 

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Kim I just don't have anything to add, but I want to say that your thread really highlights some terribly important things. I also want to acknowledge that you have and are dealing with a shocking level of pain. I can't truly imagine how frustrating this has been for you on top of how purely horrible.
 

KimT

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Steve,

My local neurologist specializes in pain management We go back to 2000 and we reviewed his notes and tests. He also believes I have fibromyalgia. He was the first doctor to do an EMG and was horrified when he saw the results. He was expecting a clean EMG or, at least, something like nerve impingement. I ignored his advice to go to Mayo for about six months. I convinced him to get into the medical cannabis business and he is so happy many of his patients are off narcotics and other toxic drugs.

My MO is to put on a happy face, push the pain away, and try to act normal. My new friends here are catching on. I never mention ALS but one of my neighbors has a nephew who was diagnosed young. I had to come out of the closet at a card game and give her a printout of all the resources available. She and her husband are old and I knew anything verbal would be lost in translation.

Tillie, the pain is controlling my life now. I'm still strong enough to walk, drive, and use my arms. I can breathe without a BiPap. I am losing strength and muscle mass but I can still use everything. I get some brain fog but, again, I think it could be fibromyalgia.

Honestly, if it were not for the fissure I'd take 1/4 of an Oxy today just to get some relief but I don't dare add to the constipation.

I switched from the Mirilax to just a stool softener and reduced the psyllium because my diet is already high in both types of fiber.

Thanks for letting me vent. My sister-in-law is bringing my brother over for a visit this afternoon. He is bad, both physically and mentally.
 

KimT

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Had my return visit with the gastro today. He prescribed Linzess and a compounding cream of 0.2% nifedipine/ 1.5% lidocaine to give it a shot for 6 weeks. If not entirely healed referral to proctologist for LIS (surgery where a cut in sphincter to reduce spasm and promote healing). Would you believe there is a dedicated support forum for anal fissures? I wish I had not found it but will proceed with doctor's recommendations.

I've been doing all the right things and I'm very thankful my breathing is still pretty good.

I'm going to continue conservative treatment until January and proceed from there. I go to clinic in January. Have not been in six months because driving to Jacksonville is a pain, figuratively and literally.

My brother actually had a good time here. He drank two beers and watched a documentary. He seemed very lucid and got up and got himself the second beer. I'm worried about his wife. She claims she has COPD but I did a breathing test on her and her FVC was 90 and the pattern was normal. It seems much more like allergies as she chokes, coughs and her nose runs. I'm trying to convince her to go to an allergist and figure out what she is allergic to. They both take OTC "allergy pills" but couldn't remember what they were.
 

wmilo

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Hi, Kim. So sorry you are going through everything you described - you are certainly entitled to rant!

I always used (pre-ALS) to feel guilty about taking naps, but I'm working to overcome that. :smile:

Best regards,
Bill
 

KimT

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I ordered a rollator today. I still have pretty good balance but the back and knee pain are making me afraid to walk too far or too fast. It will hold my "stuff". It'll fold up and I can put it in the RAV4 if I venture out to places like the mall. Also, moving keeps me "moving" and that will be helpful while I'm waiting to see if the fissures heal or I need surgery.

I spoke with my cousin, a registered nurse, retired from the Army as a Lt.Col. She works for the VA in West Palm Beach. She told me she lost 40% of her blood after rectal surgery that went bad and was hospitalized for a week. She had a very complicated case but I'll be sure to cut out all things that thin my blood for a week before surgery, if that becomes necessary.
 

dldugan

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Kim,

I hope the surgery is not required. I went from a cane to a rollator a couple of months ago. It makes me feel much more comfortable when walking. Use the seat if you get tired.

Darrell
 

beauty4everyone

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Hi, Kim, My heart goes out to you and sends caring, healing thoughts.
* In spite of everything, it's good you can breathe well, still get around, and can have a party/get together with friends. I hope you all have a lovely time together and make happy memories.

I have a Rollator, too. It's a great help. A comforting place to sit and rest if no chair is available. Squeezing the breaks when I feel out of balance helps me "right" myself. Perhaps it's just the deliberate focusing that does it, but it makes a difference. I fall over if I don't hold on to something at all times. (Annoying)

The cloth "basket" underneath holds LOTS of stuff. Taking it out to fold it up is a chore, but it is helpful. I still use mine from bed to bath. Don't trust myself for more than that. Transport Chair fills in until we can afford a van.

Hopefully, all the doctors will correctly discover all the right diagnosis and effective treatments to help you heal or be as well as possible under the challenging circumstances. May it be so!! May blessings abound. B.
 

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chally

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Not bored at all Kim

I think lots of us have multiple things beating us up!

For me if I have two or three things going on I consider it a piece of cake but six or seven beats hell out of me and my cals.

Hope things lighten up for you soon Kim

Have a great Xmas party


Love ya. Chally
 
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