the song that never ends

[Sandra]

Hi all, hope things are going the very best for you all, I've been having a terrible time lately I am so tired. It just seems like one battle after another. If it's not thyroid isues, it's digestion issues, if not that then pain....I have woke up the past 2 weeks litterally clinching my teeth, head and neck throbbing. Sometimes when i am feeling really sick my muscles seem to stiffen. Especially in my shoulders, neck and jaw. I don't know if it's sjogren's or what. i was in a car accident about 11/2 years ago, hit from behind and my neck hasn't been right since. it's a real bummer too, I have trouble looking down or up and even side to side when things tighten up. I can do nothing if ican't move my neck. I have a phsyio and massage person and it helps but boy this is one problem I sure wish I could shake loose. I get headaches and dizziness, and horrible fatigue. I litterally lay around waiting for life to start again. It's so depressing yet I know it's not depression for as soon as the pain lifts I am off again.
I am close however to trying antidepressants just hoping they might help. I think the fatigue is the worst, and when I try to sleep my neck and head hurt so bad I can't even do that. I have no medical support as my gp is never available last week I got a call that he was once again shortening his hours...10 hours per week for a 2500 patient practice. And there aren't enough dr's here and even if I wanted to fight to get another one I'm too tired and sick to fight that battle.
It just never seems to end and then I get to cope with  the rest life throws at me too. Yesterday we found out a friend was diagnosed with pancriatic (sp?) cancer, and has days to weeks to live. He's 43! It's taken 7 months to diagnose him! he's been told all along it was irriatable bowel??? How does that happen!  >:(If he, a strong young healthy man that out of the blue becomes very ill and it takes them 7 months to figure it out what chance do I have of ever getting any support through the rough times? And considering his situation do I have any right to complain anyway. Sorry for the rant but there is just nobody else who could possibly undestand. Thanks Sandra.

[astoriagrirl2]

So Sorry, times seem so hard somedays. It seems like we will never see the silver lining. I can relate to being tired.
I have spent 2.5 yrs tring to find out why I can not remember, shake the musle pain, joint pain, ect. docs told me
loose wieght, hosimotoes thyroid did not help that, but growing tumors in my mouth they did come up with sjogrens
I thought its about time! But to my surprise, neuro does not want to treat me, and my pc just passes the buck to rumo.
and new drugs, still cant move. nor can i work, no one seems willing to help, in nv we have insurance that is not very
willing to provide good health care.
but did want to ask if you were able to use a neck pillow, it helps me when I am so tired I can not hold my neck up.
also the extra soft pillows to cushion your neck while in bed. hot towels also help head and neck.
That is what helped me.
Hope it helps, a pain in the neck make dealing worse. any pain does.
good luck Gods speed.
astriagirl2

[Scottietottie]

Hi Sandra 

I'm sorry you're feeling so rough. Who do you see for your thyroid? Do you see an endocrinologist? As you already know it can cause so many issues but if they can get that straightened out - it would be a start!!!

Do you take NSAIDs - because they relax muscles as well as give pain relief. I can't take them now because of gastric issues and unexplained bruising but if everything really tightens up I still resort to them for a few days of relief!

I get quite a lot of neck pain and my GP prescribed Amitrityline at a low dose and it seems to help. I hust take 10mg every night before bed time. I think it's an anti-depressant but I've definitely been given it for pain relief. I notice a difference if I don't take it.

I'm so sorry to hear about your friend. That is really hard and especially when he's that young. I hope they can relieve his pain.


Astoriagirl2  Welcome to Sjogren's world! Have you seen a rheumatologist yet or are you waiting to? A rheumy is usually the first doc people with SjS are sent to. many people don't get neurological symptoms and the ones that do usually get referred to a neuro via their rheumy.  Do you see an endocrinologist for your Hashi's and have they treated it satisfactorily?

Take care - Scottie 

[Skylar]

Hi Sandra - I'm sorry you're going through such a hard time. And that is very sad, such a young person dying of pancreatic cancer and it took them so long to make a diagnosis.

I know Astoriagrirl suggested a neck pillow but if you don't have one, I was taught by a physiotherapist to roll uder the bottom edge of my pillow so there would be a bump that would act as support for the neck when sleeping.

You also mentioned antidepressants and they may very well help you a little with the pain - won't make it go away, but may make it easier for you to deal with the pain.

[Linda196]

Sandra, as difficult as it is to understand and accept, there are forms of cancer that progress extremely fast, and there's no way of diagnosing them earlier. In my sister's case, we were able to see a series of CTs and ultrasounds, backed up with blood work for cancer markers, that showed the appearance of 2 small swollen lymph node in her chest, that by one week later had multiplied to more than a dozen, all at least 4X the size of the original ones, and after 2 weeks had almost filled her chest cavity, compressing her lungs, and her abdominal cavity was nearly filled. At the same time, cancer markers that were negative one week, were extremely high 8 days later.

She had had routine screening in February (because our mother had ovarian adenocarcinoma and our father had liver cancer we both had ultrasound and blood screening yearly) that was completely clear, and the manifestations started appearing in April! Some of the earliest signs (before the presence of a tumor or any markers), can be digestive changes.

Does your community have a "no GP" list that you could get on? I know that you still technically have one, but at least here they consider any practice that is less than 45% fully operational as being shared, and patients of those doctors are eligible for the list. Our other option here is a clinical practice partnership...a few doctors sharing a patient list and practice. Granted you might not see the same GP each visit, but sometimes a fresh point of view can be helpful, and the docs in joint practice seem to keep themselves well informed about all the patients. I'm quite lucky, I've had the same GP since he set up his practice, and now he takes part in a shared clinic outside his private practice, so if (when) he chooses to retire, I have a foot in the door of the joint practice.

Astoriagirl, welcome to Sjogren's World. You are so right about any pain making coping more difficult, and neck pain seems somehow even more damaging. The only nearly successful pain relief I've found is a combination of physio, traction, massage and acupuncture. Apparently I've had spurs on the vertebra of my neck almost since birth (I was born face first with my neck completely extended) and they, along with two major injuries I can remember and probably some lesser ones I chose to forget, seem to want to cause me some discomfort!

Please browse around the site, get to know us, and maybe post in the newbies section, introducing yourself so we can get to know you.

[Pooh]

Sandra,
I'm not sure if you can purchase one at the pharmacy or if you have to have a doctor's prescription for one.  However, you could try one of those "soft collars" that are used for neck injuries.  I have one that I wouldn't trade for the world, that I use when my neck starts up.  When it starts to hurt so bad that I can't seem to hold my head up, I get my "soft collar" and wear it for a couple days.  I even sleep in it.  It's the only thing that helps, besides my rice collar that I heat in the microwave. 

I'm so sorry about your friend, it's really shame some doctor's just won't take the time or are able to take the time for their patients. 

Hugs, Pooh

[Sandra]

well when one door closes another opens, thanks for the posts I really needed it. I hate to complain about our dr's and nurses as they are our only hope and i suppose i will never understand cancer period. But I got a cancellation call today for a resperologist and for a neurologist. I was booked for the end of Sept, i hope they can help. i do have thyroid issues, for the past couple years my TSH continues to be very low. My thryroid medication has been changed/increased about 5-6 times. I have an appointment with an endo in Sept.
The appointments make me nervous as i fear i cannot be clear or specific enough with this disease. It changes so often and is a roller coaster of symptoms.
I do believe there is a problem neurologically since the auto accident whether directly of indirectly just setting off a long bad flare. The thyroid shouldn't be that difficult to figure out one would think, I have been hypo since 18 and practically never needed adjustment. I'm sure it's all realated.
I will try a neck pillow, I haven't one of those yet...I'll put it with my collection...what ever one works.
I have tried and did fill out an application to get on the GP waiting list but they are saying only those without a dr will be considered. Understandable I guess. i don't mind at all sharing dr's as i too believe two or three heads are better than one especially heads that are not burnt out. Isn't that sad I don't think my gp's barely 30 yet!
I have lots of issues with medication even over the counter. Anti-inflamitories worked pretty good for a while but then my GI tract got totally messed up so I try get by on the occasional tylenol extra strength, arthrisis or if need be tylenol 3. I can see i will have to be much more clear about my state in Aug when i see my rhumey. I was hoping that "this too shall pass".
Thanks everyone, Sandra

[Linda196]

Sandra, I'm very glad to see that you have an appointment with an endocrinologist, because if your TSH has been consistently low, that's an indication to decrease your thyroid medication, not increase it. Hopefully an endo will get it sorted out for you.