No RLS, just FM & RA and despair

RLS occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
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Elfrieda
Posts: 32
Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

No RLS, just FM & RA and despair

Post by Elfrieda »

Hello people,

I needed a place to complain, and you people were so kind to me in the past. I haven't posted to this board in ages. It was once suspected that I had full-body RLS, but it turned out that I had neuropathic pain from my fibromyalgia that was causing my wiggly, antsy, restless feeling I had all over my body that made me want to just give up on life. That is under control now with the help of a strong drug cocktail. Now, it seems that I might have rheumatoid arthritis as well as the fibromyalgia, chronic myofascial pain syndrome, chronic migraine, IBS, GERD and the chronic fatigue that I have.

You can imagine that I am feeling a bit low after hearing last Friday that RA is coming on as well. I trust my rheumatologist. He's one of the best in the country, well-known for his work in fibromyalgia and related conditions. Like I said, I kind of needed to reach out and touch someone who would understand my despair.

Elfrieda

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

((((((((Elfrieda))))))

Post by becat »

It is so good to see your name again. You have been thought of often. In fact, I was thinking about you just a week or so ago. Wondered how you were doing.
I'm am so sorry your list got bigger. Fibro seems to be a reoccuring theme around here. I hope you'll help educate us, along with Jan and our Rubyslippers. Both have gotten the same news. Your input would be great. Not to mention that you know we care and we'll let you vent here.
It must be a big relief to have a good doctor helping this time. I think it was you that was going to fire your last Neuro.
You know your always welcome to come here. I really miss your wonderful post. Please don't be a stranger anymore.
Hugs and my prayers to you.

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Those darm autoimmune disorders are the pits. My DH has celiac disease, constant weird pains and spasms that they attirbute to the autoimmune stuff, and has alopecia that comes and goes. One doc said he had fibro, but he doesn't have all the tender points. I need to remember to ask Jan about that; I seem to remember her saying that you don't need to have them all. I know how crappy he feels sometimes, so I can only imagine how you must be feeling.

I don't know anything at all about RA, but I do know that I'd be feeling a little low myself it I'd just found out all that. My thoughts are with you.

Ann

Elfrieda
Posts: 32
Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

Post by Elfrieda »

ViewsAskew,

No, you don't have to have all 18 tender points to have a FM diagnosis. I was diagnosed years ago. However, I do have all points. I've had that long list of stuff for years, but I was coping with it quite nicely until a little over a year ago when I took a dive I couldn't get out of. I seem to keep sinking lower and lower. Now, the storng possibility of RA.

Becat,

Thanks for the kind words. I needed to let off some steam this afternoon, and I'm glad you were there. RLS is one of the side effects of FM, so no wonder it's mentioned a lot on this site. FM encompases so many things. I seem to have them all. My doctor says I have a severe case. Still, I want to soldier on. It's funny, though, I'm in my 50s, and it seems my life was just getting started. I haven't done near all the things I had intended, and I wasted a lot of years waiting to live. I did a lot of things but not what I had planned as my BIG goals. RA seems to be the capper. Now, I am an old woman. Not that RA is necessarily an old woman's condition. It's really hard to explain, but my self-image does seem to be somewhat damaged.

I did fire my neuro. Now, it seems my GP has to go. She doesn't think anyone should take narcotics as much as I do. She told me she wouldn't prescribe them. I told her that was fine; I would rather my rheumatologist be in charge of the drugs. I walked out of her office feeling like I had done something right. Now, I have to find another GP before I really need one.

Elfrieda

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Elfreida, this may be off-base, but have you been tested for celiac disease? It is often misdiagnosed as IBS and other auto-immunes run together. People think it's some rare disease, but it's quite underdiagnosed and the most common auto-immune disease there is. You seem like you really know your stuff, so please forgive me if you've already thought of it, but it might be worth being tested. Before my DH was diagnosed, he was mis-diagnosed with anemia, fibro, lupus, IBS, and was evaluated for who knows how many other diseases. He has constant tics and twiches, pain, and weird neurological symptoms along with the gastro stuff.

Ann

Elfrieda
Posts: 32
Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

Post by Elfrieda »

IBS is just another component of FM. Some people have it without having FM, but many FM people have it.

I have a great gastro-guy whom I trust. He is also familiar with FM. Can't beat that.

One great side effect of the methadone I'm on everyday is constipation-- beats chronic diarrhea all to pieces. Excuse me if that's too graphic. :lol:

Elfrieda

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Lovely to see you.

Post by becat »

Elfrieda,
You know I think I suffered the same self image thing. I thought of it as grieving. I really thinking I could keep up with all that was going wrong with me. I thought of them as serperate from me. Strange living in a body that didn't seem to like me. Picture this, most of my friends are 5-10 yrs my Sr.....I'm going to be a whooping 41 in March..a kid really.LOL
They are so much more physically stronger than I am, it's embarrassing most times. Anyway, in all of our yrs. together, they had never seen me in a full blown attack. Last Feb. it happened. An Adult only weekend away. I couldn't walk. I never slept. I was a broken woman, the youngest of the group. They were speechless and shocked.
We were entered in a bowling tournament. So, the one weekend I needed to function, I couldn't. I opted for a good dose of pain medicine only for the tournament. Waited to late for it to really help. It took everything I owned to do it.
I really lost a chunk of me that weekend. So I grieved. I was never going to be that person I planned to be. It was sad to realize that I might need to get "new eyes" about my dreams. I lost the me I knew. It turning out to be ok.
Your not an old woman. Your a woman that knows herself in a new way. Ok, this is what I have. You've educated yourself well, so you know what it might be. I bet is that your a better teacher to your doctors, than they are to you.
Your still worth a goal......A big one. You've always given me the feeling of a knowing, strong, Think IT, Just Do IT, lady. I'm sure when you catch your collective breathe, you'll find a newer you coming through.
I'm so glad I was here too, I missed your words.
Don't be a stranger. :)

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Elfrieda, my Friend!

Post by jan3213 »

It's Jan

I just stumbled onto this thread. I'm so sorry to hear that you might have RA. I knew, the last time we communicated, that you weren't doing very well. I just want you to know that I'm here for you, ALWAYS. You were so kind to me, sending me information, helping me, listening to me! If it weren't for you, I wouldn't have thought about FM and who knows what kind of shape I would be in now! Please let me know, via email, how you are doing. I've learned so much about FM. No, you don't have to have all of the tender points. In fact, I know someone who really doesn't have any of them, and she has FM. And, RLS IS a symptom of FM.

Please take care and I'll email you, okay? I want to be there for you just as you have been for me!

Take care my friend!
Jan
No one is alone who had friends.

Elfrieda
Posts: 32
Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

Thanks

Post by Elfrieda »

Thank you all for your kind words. It was just what I needed, just when I needed it.

ViewsAskew: It would be rare for your husband to have FM. There are men who have it, but not often. It's another of those things that we ladies have mostly to ourselves. I was about to say we wouldn't mind sharing, but I can't say that. I wouldn't wish this on anyone.

Jan: I will write you when I get a free moment. You know the new semester has started, and my students are very needy at the beginning of the semester.

Becat: What can I say, you're a treasure.

Oh, yes, I have a "touch" of plantar fasciitis in my right heel. Does there come a point when it all just gets a bit ridiculous and you have to laugh hysterically?

Thanks again,

Elfrieda

Anonymous

Full Body Hurt

Post by Anonymous »

I am new to this site and had some questions about RLS, but really had no idea it had any connection to FM. FM/CFS and migraines are an everyday challenge for me at this time, but -- it could be worse. I try not to answer people who ask me how I feel -- I only say "so so".
My GP is working hard to try to help me, but we have been fending off the new attackers for 12 years now. It's always something new.
Try to keep your chin up -- push yourself to be social and work with the things that you can change in your life rather than the ones you cannot.
It's easier said than done, I know.
I had to quit the "support" groups -- they were more depressing than upbeat.
Best to you, JosieAnn

Elfrieda
Posts: 32
Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

Good news

Post by Elfrieda »

The blood work for RA came back negative. I still have all the same aches and pains. My fingers and toes are still stiff, and my little finger does a trick about popping into place when I move it, but I don't have to worry, for now, about RA.

Elfrieda

CherBear
Posts: 7
Joined: Mon May 16, 2005 6:59 pm

FM/CFS and RLS

Post by CherBear »

I just joined this site today, I heard about it from Jan. I also have FM/CFS and RLS. I've been "officially" diagnosed with FM/CFS from a dr. but I believe I also have RLS. I've had FM for years but was diagnosed May last year. If you ever have any questions please ask me - just PM me if you'd like. Gentle Hugs - Cheri

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