Re: Hello to all/Chelsea

[Guest guest]

>Chelsea wrote:

>I have severe and constant pain in my hands, wrists, elbows, feet

and ankles along with severe fatigue and weakness and, many times, flu-like

symptoms. I am no longer able to work (after a truly glorious 30+ year career as

a techie in commercial insurance) and left employment in Aug. 2008. I am

currently seeking social security benefits.

>I am extremely fortunate to have the support of my ever-patient husband and

family. I try not to be a " whiner " and I try my very best to remain upbeat and

optimistic, but, as I'm sure folks here can understand, sometimes that is the

hardest battle of all. Depression is my constant enemy. We do battle daily and

I'm doing my best to make certain that it does not gain the upper hand.

Welcome Chelsea, I'm glad you found this group to join. I understand how

frustrating and draining it is to get help and try to maintain something that

resembles a normal lifestyle. Sometimes we have to choose our battles but the

one never to give in to is the one we fight for ourselves.

We deserve to be respected and understood even though we are in

pain and the pain changes the way we do things. Over time I've learned that I

can't please others if it means living a lie.

Chronic Pain does force us to put ourselves first, which was something I had a

hard time learning to do. Now I know that if

I don't take care of myself, I can't help anyone else.

The hard part is realizing many people want me to minimize my pain

as if it weren't there. I can't possibly do that unless my pain is controlled

but finding a way to do that hasn't been easy at all.

Having a doctor that respects me and listens to me took many years

to find. I'm also 54 but I don't think my family has any clue what sacrifices I

made for them, and now I realize that I should have spent more time thinking

about my own health and well being. That

was an option I didn't even consider. Now is better than never but it's still

hard.

Jennette

[Guest guest]

Chelsea says: I have severe and constant pain in my hands, wrists, elbows, feet

and ankles along with severe fatigue and weakness and, many times, flu-like

symptoms. "

 

 

I am wondering if the rheumo has ever did a sonogram on the backs of your

ankles? The blood flow going through there can affect everything you are

describing. I had this done a couple years ago and it showed much blockage and

there in was some of the problem. They cannot correct this, but they can give

you meds to help this. Once that was figured out, my life got a little better.

Of course I have other problems, but every one solved is very helpful.   Gwen

[Guest guest]

Chelsea, so glad you found this group! It sounds like you'll be a great addition

to the already fabulous group of people here, who have made much more of a

difference in my life than I think they're aware of. I too waited a long time to

find an online support group and now wonder what took me so long.

When reading your condition summary (well written, by the way) I almost wanted

to ask where you live because it sounds so much like many people I know with

Lyme disease. I guess our own experiences affect the way we see the world. I had

Lyme for several years before anyone thought to test for it and, living in a

non-endemic area, I can't blame them for that. I hope they do get you a concise

diagnosis that leads to better treatment and quality of life for you.

I too have a gem of a husband who works very hard to make up for the income I'm

no longer able to learn and is very understanding most of the time.

I agree: if you'd have told me before I became ill how limited and small my life

would become I wouldn't have believed you. Sometimes I still can't believe it

and that's when I spar with a touch of depression, but mostly work very hard on

a positive attitude and that seems to help. I tell my hubby often that the day

he quits making me laugh is the day I'm done for.

I think you'll find much comfort and support here from fabulous people who

really do understand. Every so often I realize how much I rely on this group and

am amazed at how much it's really helped. I hope you get the same thing out of

it, and look forward to hearing more from you.

P.S. Happy New Year to everyone!

[Guest guest]

Hi, Chelsea.

Drugs and guns; what a great combination! Just kidding. Welcome to the

group. I know what it is like to have that constant pain in the hands and

feet. It took years for me to build up enough of a case history to get the

primary care doctor to give me a referral.

It took 3 specialists for me to get the referral to the pain specialist. I

was diagnosed with neuropathy rather than fibromyalgia, and a year to get

that diagnoses in writing, and finally, some medical help with getting to

sleep in the form of a muscle relaxer.

For the fibro-like pain in the hands and feet, I got that under better

control with olive oil self-massage, followed by capsaicin cream on my hands

and feet, and every other spot below the skin surface that hurts. It took 2

weeks, and it did help a lot.

I hope that by following the leads from others in this group, you can become

aware of and bold enough to try new things that work for you and give you

relief, support, and a better understanding of pain issues for you and your

husband.

My own husband refused to accept the fact that my pain was real until he saw

it in writing from a real doctor. He finally broke down and bought us one of

those memory foam mattress toppers. Happy New Year to all and to all a great

night!

>Chelsea wrote:

I think I need to discuss locking my medications away with my husband,

perhaps we can put them in his gun safe (he is a army special forces

weapons specialist veteran with an extensive collection).

> Thanks again for the welcome. I'm very happy to be here.

[Guest guest]

--- Gwen wrote:

>

> Chelsea says: I have severe and constant pain in my hands, wrists, elbows,

feet

> and ankles along with severe fatigue and weakness and, many times, flu-like

symptoms. "

>  

>  

> I am wondering if the rheumo has ever did a sonogram on the backs of your

ankles? The blood flow going through there can affect everything you are

describing.

Hi Gwen -

I'm curious - how can blood flow in your ankles possibly affect your hands/arms?

Do you know the name of the condition that you're describing? I've never heard

of such a test or such a condition (and I thought I'd heard just about

everything on this list over the years!) so I'd really love to know more about

this.

Thanks,

Cheryl in AZ

Moderator

[Guest guest]

Gwen wrote:

> I am wondering if the rheumo has ever did a sonogram on the backs of your

ankles? The blood flow going through there can affect everything you are

describing. I had this done a couple years ago and it showed much blockage and

there in was some of the problem.

Hi, Gwen!

Yes, actually it was my GP that ordered this test done about 6 months ago and it

showed that my circulation was just fine. I sure do appreciate you bringing

that up, though. Until the test was ordered I had no idea that this could cause

a problem!

Chelsea

[Guest guest]

Bonnadel Baggers wrote:

>

> Hi, Chelsea.

> Drugs and guns; what a great combination! Just kidding.

**Oh, my! I never thought of it that way and am presently having a wonderful

laugh! I should tell my husband we could be like some cartel boss! Hee-hee!

> I hope that by following the leads from others in this group, you can become

aware of and bold enough to try new things that work for you and give you

relief, support, and a better understanding of pain issues for you and your

husband.

**Thanks, I am going to try your olive oil massage and capzasin remedy although

I'll have to talk my husband into giving me the massage, but it's do-able. My

doctor wants me to go to a physical therapist for hot wax immersion (hands,

forearms, feet and ankles) and I'm really looking forward to trying that. I am

always open to any and all suggestions. I figure, if I don't try everything how

will I ever know if it would have helped. And I want desperately for something

to help. Thank you.

Chelsea

[Guest guest]

" mamawolf33 " wrote:

> When reading your condition summary (well written, by the way) I almost wanted

to ask where you live because it sounds so much like many people I know with

Lyme disease.

**Hi, :

I don't think I've ever been tested for Lyme disease. 20+ years ago I had Rocky

Mountain Spotted Tick Fever but don't know if that is at all similar, I do

remember that it was just miserable.

> I too have a gem of a husband who works very hard to make up for the income

I'm no longer able to learn and is very understanding most of the time.

**We are fortunate women, indeed! My husband is gifted with a truly zany sense

of humor and I find myself in stitches about 75% of the time we spend together.

I will admit that, at times, our marriage has undergone amazing stresses due to

my condition and the additional responsibilities and stresses placed on my

husband not the least of which is his having to be the sole breadwinner.

The loss of the income I generated was quite a blow. But we're getting through

it, somehow. A lesser man would have left me years ago, but my husband, bless

him, just keeps on keeping on.

Out motto has become: " As long as we have each other, the rest will figure

itself out " . I often feel quite bad and guilty about not being able to

contribute or pull my own weight. Hopefully, someday, I will be able to do that

again.

Chelsea

[Guest guest]

My husband and I have a similar motto and have the inevitable ups and downs that

any marriage would have, especially with the chronic pain and illness facet

added in. When I get to feeling very awful about how hard he has to work to make

up for my failings I try to remember that at least our marriage is in good

shape; he still calls every day at lunchtime just to talk, comes home every

night after work, and would still rather spend an evening at home with me than

anywhere else. I have no idea what I'd do without him.

I know many of the Lymies in my groups talk about " coinfections " , RMSF being one

of them. Bartonella is another. It just caught my eye because so many of the

symptoms you mentioned are common amongst Lymies.

When I became sick with Lyme, we think it also triggered a movement disorder

that apparently runs in my family (and went undiagnosed for at least 12 years,

until three months ago). I used to wryly joke that being infected with Lyme

disease in Oregon was 22.5 times more unlikely than being an abused child in my

state.

The movement disorder is considered rare, so I doubt very much I'll ever win any

kind of lottery. Good thing I won when I found my hubby!

---chelsea wrote:

> Out motto has become: " As long as we have each other, the rest will figure

itself out " . I often feel quite bad and guilty about not being able to

contribute or pull my own weight. Hopefully, someday, I will be able to do that

again.