Re: Neck pain causing headaches

[Guest guest]

Sherry,

Thank you so much for your response. I have the forms all prepared

and ready for Thursday. If I don't get the answers I need from him

this week and he keeps treating me like I'm full of it...I'm asking

for an appointment with another rheumy. You're absolutely right! If he

doesn't believe what I tell him what's the point in continuing to go

to him....

Thank you again,

[Guest guest]

in MN,

You know I thought the same thing. When I was originally diagnosed I

was referred to a rheumy to make that determination. So why is it

that now they pawn you off on your regular doctor?! When I saw the GP

last week for this new pain he looked at me like why did your rheumy

send you here. And to get that confirmation from him that it was not

fibro, just as I had known already, was validation that I know my

body.

It's a shame that we have to feel embarrassed to ask for pain meds.

When I told him that one regular Vicodin doesn't always do much for

the pain he immediately jumped in to tell me that I shouldn't need

more than one and shouldn't really need them anyway except " maybe " in

the short term. Well I haven't asked him for pain meds since and that

was over a year ago because he made me feel guilty. I just deal with

it and that's not always easy!

[Guest guest]

I've had somewhat the same experience with my rheumy who initially diagnosed me

as having fibro until she noticed that I had a history of mild psoriasis; then

her diagnosis immediately changed.  But when she thought I had fibro, she said,

" All you can do for it is get enough rest and exercise. "   However, I learned

from a friend who goes to the same internist as I do and who does, indeed, have

fibro, that my internist is very knowledgeable about the disease (there are

several drugs that can help) and has been very effective in treating hers. 

Guess rheumys think it's just too menial a disease to care that much. 

 Joanna Hoelscher

[Guest guest]

Hi ,

I am new at this. I have been reading, but this is my first reply. I have had

exactly what you describe. I feel like an expert, identifying with so many

things I have been reading here. PA and RA affect different people in different

ways. I had, for a while, the drawn out neck pain that radiates through my

shoulders and slowly or sometimes quickly, I would develop headaches. This

started during a period when I was off my Enbrel. I sometimes just did not know

what I could do. I take Enbrel for my PA. It has been the only thing that really

helps me. I also take strong aspirin when needed. The Enbrel is what stopped my

neck pain. My pain is / was from inflammation in the muscles and tendons. at

first I thought it was in the neck joints but it was not. I am 40. My arthritis

came on strong all over when I was 25. It has been an emotional and physical

roller coaster. I know what you feel. I wish my family and people I know could

really understand the pain I go through. When people do not see - they do not

really under sand. It is nice to connect with people who are sailing on the same

ship as I am. Some journeys should never be taken alone. Good luck to you.

 

Randy

[Guest guest]

Hi Randy,

I found that I got alot of relief from the neck pain/headaches when I

started taking the Baclofen. Then when I saw my rheumy last Wednesday

he gave me an injection of Depo-Medrol. By that night I noticed a

big relief in all my joint pain and an increase in energy I haven't

had in over a year! I know that the injection is just a temporary

thing but I'm enjoying it while it lasts: ) I also came down with a

cold 2 days later but I'll take it over the pain any day. I'm

supposed to start Arava today but I'm thinking I should probably call

and ask if I need to wait til the cold goes away.One other thing I've

had is insomnia. I'm almost sure it's the Medrol since it came on

that night after the injection. Hoping that subsides soon.

Take Care,

[Guest guest]

HI Randy,

Although I am not on Enbrel, I get aches in my neck etc. I have

had Pa for sometime. I also have autoimmune hives. Anyway I always found

that the pain relievers seem to shrink the swelling and therefore the *

shifting of your tissues* causes the added burden of aching on top of

your already aching body.

Sort of Analytical... And of course our periods never help. I am 42.

[Guest guest]

Hi and Randy,

Re pain in the neck, does any of you suffer from vertigo, or dizziness. My neck

is totally stuck. It is more and more often that I feel that the world goes

around me. Or my head goes around. I hate it. My family Dr. says that it is a

direct results from the fact that my neck is " one piece " stuck. My PA Dr. says

that it has no connections to that.

What do you know about it? Are you suffering from the same problem?

Arie

[Guest guest]

<<One other thing I've had is insomnia. I'm almost sure it's the Medrol

since it came on that night after the injection.>>

I also suffer from the neck-headache issue. I am responding to let you

know that yes the Medrol is causing the insomnia. I am a 40 yr old

woman and Medrol/prednisone cause me to have insomnia and to have " hot

flashes " during the day and night. I believe it is pretty common. I

really benefit from these meds on occasion but dread the side-effects.

-Eileen

[Guest guest]

Arie:  I did have vertigo once or twice.  It was awful.  I had to lie still and

literally could not even move my head the slightest without the room spinning

and the extreme dizziness making me sick to my stomach.  True vertigo

is normally from an inner ear infection that upsets your balance.  There are

likely a lot of other reasons, though, one might have just plain

dizziness.  Vertigo is way different from " just " being dizzy.   

 Joanna Hoelscher

[Guest guest]

Hi Arie,

 

I get light headed and sometimes dizzy. I never really knew why. When I tell my

doctors - they seem to not have much to say. I have got a good feel for what is

going on with my flares - aches and pains, but the light headedness is sometimes

constant and starts to really bug me after a while. Right this second - I feel

okay - balanced.

Randy Gribble <randyebr2005@...>

[Guest guest]

hi randy,

Un-balanced, this is the expression I was looking for. My head rather guides my

body to go in circles. I can't control it.

This is a terrible feeling. I have to lay down, to prevent falling.

thank you,

arie

________________________________

From: Randy Gribble <randyebr2005@...>

I get light headed and sometimes dizzy. I never really knew why. When I tell my

doctors - they seem to not have much to say. I have got a good feel for what is

going on with my flares - aches and pains, but the light headedness is sometimes

constant and starts to really bug me after a while. Right this second - I feel

okay - balanced.

[Guest guest]

Hi ,

Headaches, in my experience, can go with either PsA and/or fibro.

You are right, Vicodin doesn't help that kind of headache much but

I've learned to combine a muscle relaxer with it and get good relief.

If you have ANY PsA or osteo-arthritis in your neck, try an ice pack

for 20 minutes. My neck gets disturbed when I do anything involving my

arms (picking up sticks, pulling weeds, scrubbing the sink, etc.) and

the cold often settles it for awhile.

Tension headache is relieved by the muscle relaxer for obvious

reasons. I've used Soma for years with good effect, often taking only

1/2 tab. with 1/2 Vicodin. If it isn't relieved within an hour, I take

the other half of each.

> The pain thing too- I know not everyone has much pain w/ PsA- maybe

I

> have more b/c of FMS.

That may have a LOT to do with it; I have fibro and PsA and have never

really been able to distinguish the difference in which is causing the

pain after 20 years.

But I feel ashamed about asking for more

> Vicodin when I need it. And vicodin doesn't always even help much.

> I think it is so drilled into us that narcotics are bad and so there

> is a sense of shame and secrecy that goes w/ it- even when it is

> appropriate to use.

I soon learned which of my doctors was OK prescribing my pain meds and

quit asking the rheumy at all because she'd always lecture about

addiction. With today's computerized records, it's easy to document

how often you fill your Rx -- unless, of course, one uses multiple

pharmacies. That alone should send up a red flag to doctors.

> And so when did rheumys stop treating fibro? Years ago when FMS

> was " new " to me- it was a rheumy that I saw. Now the rheumy I see

> doesn't seem to care much about treating the FMS- just the PsA. And

> my regular doctor think my rheumy should treat.

Sounds like you need a new team of doctors *if* you live in an area

where you have that option.

> Just venting mainly I guess.

Actually, I thought your " complaints " are legitimate.

Patty B in the lovely Pineywoods of East Texas

[Guest guest]

re:  treating for fibro and PSA.  My rheumy when she first thought I had fibro

told me the only thing I could do for it was get enough sleep and exercise. 

Then I found out later from a friend that my internist has had very good luck

treating patients with fibro, using some of the newer drugs that are found to

help it (and that are totally unrelated to drugs for PA and are not narcotic

pain meds.)  So, take your help where you can get it. 

 Joanna Hoelscher

[Guest guest]

I started on the t.e.n.s. unit (look it up on http://WEBMD.com) it has

reduced the pain that I don't take my pain meds. anymore

Ralphie

[Guest guest]

Hi,

I have PA and fibro as well.

If the pain is on a joint chances are its PA. If the pain is muscular

then its probably fibro.

I get rid of headaches with good old extra strength Tylenol. I have

other things for the PA and fibro pain.

Asking for an increase in a pain pill is probably expected as PA only

gets worse -- it'll never get better.

Please be careful with neck pain as I had to go to a therapist to

help me because the PA has affected my spine.

SD

[Guest guest]

Hey Ralphie,

It's really great that the TENS unit works so well for you! I'm very

happy for you. <smile>

<<I started on the t.e.n.s. unit <snip>

it has reduced the pain that I don't take my pain meds. anymore>>

I've used my TENS unit many times over the last 15 years, originally

for neck spasms/headaches, and later for back spasms, too.

May I inquire just where you place the pads to get the best effect?

Many thanks,

Patty B. in the East Texas Pineywoods where the redbud and pear trees

are beginning to bloom. So pretty!

[Guest guest]

Joanna,

Can you tell me more about those non-narcotic drugs?

I have to rely on Vicodin and Soma for " break-through " pain that the

Lyrica and Mobic don't control.

I'm running into things like:

" It's poor posture " (Which I admit after years of unrelenting

pain.)

" You need to exercise. " " Do you remember the exercises we gave

you in physical therapy? " etc., etc., etc.

When feeling well, I " exercise " by trying to catch up on cleaning

(vacuuming & sweeping) and yard/garden work. Plus, I'll do some of the

stretches they taught me in physical therapy. I get so discouraged

sometimes!!! If they don't want to renew my home-health physical

therapy, why don't they just say so?!!!

Frustrated Patty B. in the lovely Pineywoods of East Texas

[Guest guest]

I have trouble with 1 & 2 disks, so the 4 pads go across my lower back,

I use it for an hour then relax 1 hour and use it again for an hour on

a different setting. For anyone out there I would recomend seeing your

dr. before using it. It's like the meds in getting rid of the pain so

be careful not to over entend yourselves and cause more injury to your

joints!!!!

Ralphie