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KimT

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In February I noticed my right knee started to hurt after exercising in pool. Just sitting on a noodle and peddling it like a bicycle (same as I had been doing for last year). I also continued walking on a treadmill for 10 minutes (1/2 mile) each morning, sometimes on a slight incline to get my heart rate a little higher.

Went to Mayo. Neuro said he didn't think pain was related to ALS. Sent me to Rheumy because of family history of autoimmune diseases, low positive ANA, and Hashimoto's. Neuro was convinced pain was caused by fibromyalgia. Blood work ordered before Rheumy visit. Rheumy said ANA was because of Hashimoto's and he didn't believe I had fibromyalgia. He referred me to Orthopedist. Went to Altamonte yesterday and saw the group that the Orlando Magic uses. Brought report of negative MRI from February. They did x-rays and said my knee joints look excellent. He gave me a shot of steroids and something in the "caine" family. Gave me a slip for PT and I drove home. I've been to three PTs in four years. All made me worse. Found one recommended by friend who has experience in neuro (mainly MS). If no improvement in six weeks, ortho wants me back for new MRI since the pain is much worse than February.

This is all in my "good" leg. It feels like a torn meniscus (had one in other knee from a skiing accident way, way back.) The ortho agreed that my "pain point" was consistent with my thoughts. He wants me to send him the CD images which I should have taken with me but didn't because it would tack another half hour onto my drive. I'll get them this week and mail them to him.

You know, ALS is bad enough. PALS at my stage of progression are still going out, swimming, even walking their dogs. I can still walk on my toes and heels although my balance stinks.

All doctors agreed I was a "complex case" I just feel the pain.

And I'm so tired of people telling me, "you'll beat it." I know they mean well but it feels like I'm about to explode and I don't want to do it to someone innocent.

To make matters worse, two more ladies in my hometown were recently diagnosed. That tiny village has no resources. The closest hospital is an hour away. My poor brother is stuck up there with beginning dementia and failing physically. He's 82 and fell recently. He and his wife have tickets to return to Florida in November with no other support but me. They are in denial about my prognosis. One of their daughters has not contacted me in over a year and the other calls only to discuss her father. If the subject turns to ALS, I'm swiftly dismissed.

The cannabis gives me bad heart palpitations if I work up to a dose that helps the pain. I can take as much CBD as I want without issues. It's the THC.

I sold my van in January because the condo needed windows badly. Nobody would drive the van because they were afraid. I drove it a couple of times and it was different than driving my SUV but it didn't scare me. That's not the point.

When I make the transition to my PWC I'll have to buy an old used rear access van because the parking spots are narrow in this building. Fortunately, the building has accessible ramps so I'm able to go from my condo outside and even around to the pool area as long as I or someone I'm with can unlock the gate to the pool. The social room is also accessible. I met a local guy who drives sick people around so he'll be the one to drive me. We have virtually no public transportation.

I really just needed to vent. I envy PALS who have people helping them every day. I've made some very nice friends at this condo and one woman is driving me to church each Sunday. The church we found is not totally accessible but it does have one ramp and just needs another to make it accessible. Sunday I'll have a closer look. It is a small church only 1/2 mile away and I like the pastor. He wears shorts and crocks and his preaching is all about love.

Then there's Trump........
 

ShiftKicker

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Kim, I am so sorry. You are being handed a raw deal. That myth about "no pain in ALS" has done a lot of damage and caused a lot of unnecessary suffering. Besides, it doesn't matter what's causing the pain- fact is, you have it! Pile on a family that needs you but does not accept you need them in return, and emotional pain is added.

I am glad you have found a church that takes care of your spiritual needs and providing a bit of community during a time where everything else is burdensome. You deserve care, love and community.
 

KarenNWendyn

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Fibromyalgia is incredibly common and can intensify pain from other causes. People with fibro get other diseases. Sometimes PT can exacerbate fibro pain. True that Hashimotos can be associated with a positive ANA. The good news is that people don’t die from fibro per se. But if you have ALS and fibro plus other injuries, that does sound painful.

Kim, you have a lot to vent about. Hopefully you find this to be a safe place.

Re: Trump — enough said.
 

MarieLaure

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mortcerf
oh Kim this is a heavy burden indeed !
I wish the docs can quickly manage to find out how to ease your pain, your whole family accept to acknowledge that you are living with all and make the effort to understand. How about sending an informative email, something that doesn't require an immediate answer, just some reading and opening of mind and heart ? maybe just adding that it hurts to be dismissed. Then they can think about it.
I hope the people at that church with the cool pastor will prove to be open hearted.
There are some good people
good vibes to you.
 

KimT

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PALS
Diagnosis
08/2015
Country
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My sister-in-law and both my nieces have seen pieces I've written about ALS. They even read the ALS Awareness document. All my relatives still live in parts of NY. Up until my diagnosis, many came down for visits; some twice or three times a year. After my diagnosis I was extremely cheerful and positive when they came down (to visit my brother) and did most of the cooking/buying. Now, I guess they figure my brother's days are numbered and they no longer need me to take care of him. That was the whole point of them moving him and his wife down. I took care of my parents and they expected me to take care of him. I was 100% willing to do it because I thought I was healthy and even planned early retirement so I could spend more time with him. I like his wife but she doesn't deal in reality.

I appreciate the support I get here and never take it for granted.
 

MarieLaure

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mortcerf
well then may be just be direct and tell them exactly how you feel physically and emotionally. You say you guess what they think. You might have a good surprise if they can discuss this sincerely.
I am quite aware this may sound naive but you seem to have always given so much now some people may take it for granted. On this forum everyone knows how nothing is ever to be taken for granted, but your in laws could be reminded. There is a chance they avoid the subject because it is so scary.
may you meet good docs and understanding people
 

Narrowminded

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Lost a loved one
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Kim please know I am praying for you and all of these issues you have going on.

Hugs
 

KimT

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Joined
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PALS
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The Beach
Sue, Thank you so much.

I just think I'm hurt. Having no husband or kids, I invested much time and money into my brother's kids and grandchildren. I don't care about the money but I've invested love into these relationships and now it feels like I'm just being swept under the carpet.

I don't know if ranting helps or hurts but I so appreciate the opportunity to do so and the kind replies I get on this board. I made an appointment with a counselor for Monday. He has known me personally and professionally for over a decade.
 

MarieLaure

Forum Supporter
Distinguished member
Joined
May 16, 2018
Messages
232
Reason
Loved one DX
Diagnosis
10/2015
Country
FR
State
Ile de France
City
mortcerf
Of course you’re hurt. It hurts !
Ranting does help in the short run and knowing you are understood in the long run.
I am glad you know a counselor you like. It sounds like a brilliant idea.
Rant on as much as you feel like it !
Sweet vibes
 
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