Left shoulder-neck pain

[Bleu]

Has anyone experienced severe left shoulder or left side neck pain at onset, or during anytime with vf symptoms?

I was diagnosed with vf Dec. 2008.
After being hospitalised in Nov. 2008 with pleural effusion on left lung.
Here it is Mar. 2010 and after lung surgery to remove a mass (cocci +), and now beinging monitored by ID doctor.....I have a titer 1:4 which has dropped from 1:64 in April 2009. I still present some vf symptoms off and on, less intense though and still have a severe pain that comes and goes in my left shoulder into neck area.
At the time I became ill in Oct. 2008 I didn't know why I had such terrible pain in my left shoulder, and then when it was discovered that I had fluid on my left lung I thought the pain was due to the pressure from the fluid (over 5 liters) but now 17 months have gone by and I still have this pain, it has never left me, and can be very disabling at times.

Anyones input would be greatly appreciated.
And STRENGTH to all who are dealing with this vf.
Bleu

[CindyinMN]

Bleu,
I was sick in Feb 2008 after returning from Arizona. Thought it was the flu. Then relapsed in Feb/March 2009. Diagnosed with cocci due to nodules throughout both lungs. Blood tests all negative. I have extreme pain in my left shoulder and stiff neck since March 2009. It bothers me everyday!!!!!I also had left ear pressure for almost a year! None of the Dr. I have seen could tell me why I have pain. I have had bone scans and Ct's and MRI's and still no answers. I take muscle relaxants every night that do help with my shoulder and neck pain. Without them I can hardly move in the morning I am so stiff and sore. I have tried nerve drugs, chiropractor, accupuncture. My fifth Ct taken this week shows two nodules remain and I have a 4 cm scar in my lower left lobe. Repeat Ct in 6 months again. No Dr. here can tell me anything.... I have no idea what to do other than just be thankful to be alive. I hope you have Dr.'s in your area that can help you. Let me know what they say about your left shoulder and neck pain. I could use help with any answers you may be able to find!
Take Care,
Cindy

[Bleu]

Hi Cindy,
Thank you for your response and information regarding your condition.
This week I have appts. with three Drs. one is a pulmonologist, this appt. is to schedule a broncoscopy, then I see a neurologist for a nerve function test, this is for the shoulder/neck pain and last is a gastrointerologist also for the shoulder/neck pain, why a gastro?...it seems that my pain increases after I eat and so I believe that I will be consulting to schedule an endoscopy.....I have been concerned that my stomach my be affected by the cocci....I discussed this with my surgeon and he mentioned that I should have a motility test done also because this can cause pain in the left shoulder (decreased motility of the stomach), and according to my surgeon any virus or immunocompromising condition can cause decreased blood flow to the stomach. Anyhow, we'll see. i will keep you informed of my progress if you have any questions or anything you can also contact me through my email address.
Strength,
Bleu

[CindyinMN]

Hi Bleu,
I had GERD problems during my illness as well. I was referred to Gasto by my ID doctor for an endoscopy also. It only showed some stomach acid. Interestingly my ID doctor thought all my shoulder and neck pains were just from heartburn. Because I tested negative on bloodwork and all immune defeciency test she basically gave up on me. So she told me there was nothing else she could do for me. I have been on prilosec for months with no shoulder neck pain improvement. My family practice doctor thought it was nerve related so she tried me on neurontin (nerve meds) and it did nothing. So she did not refer me to Neuro. I just got results from my CT today and it shows consolidation in the lower left lobe with mild volume loss. Most likely scarring. I hope thats all it is. My shoulder hurts so bad some day I have to go lay down on the floor at work. The pressure on it helps me. I really hope some of your upcoming appts give you some relief. Just be persistant and keep trying to get answers. I have stopped doctoring for awhile to try to get caught up on last years medical bills!
Never, Never, Never give up!
Cindy

[Bleu]

Thank you Cindy, thankyou for the encouragement.
Yesterday I had a really rough day and night, into this morning.
Saw a new pulmonologist yesterday and he has ordered CT (cervical spine) that will be done this Thurs. 25th. Will let you know how that goes.
I will never give up!!!
Again, thank you so much,
Bleu

[tinkerbell]

Hi Bleu, I also have had neck and shoulder pains. I was diagnosed in December after a Bronchoscopy am on 400 mg. of flucanazole I had many aches & pains shins, knees, back neck, and both shoulders. Now it is down to my left shoulder which my ID Dr. thought also might be nerve related she is sending me for imaging this week. My neck is still stiff not like it used to be with bad headaches so she decided not to do the lumbar puncture. I also have a big red knot on my middle finger which she says might be arthritis. I am now starting to loose alot of hair each day. I had a bone scan so it it not in my bones so my ID doc cleared me to go to the Chiropracter. The shoulder really does hurt alot and I believe it is because of VF but the Dr. wants to say otherwise. I hope things get better for you. It truly is a day to day battle. Thank goodness for all the supporting people on this site.

[Bleu]

Hi Tinkerbell, so good to hear from more people on this site. But sorry that we all suffer so with this disease.
I hope you can also get some answers from the imaging you will undergo this week....please keep me informed.
i went for an EMG nerve function test today only to have to reschedule for next week as the machine broke down.
Hopefully I will still see the gastro Md this week and get moving forward with whatever testing I can be scheduled for.
I'd like to know if your shoulder pain increases when you have eaten and are full or after drinking something? I ask because my shoulder pain becomes worse to very severe after meals and sometimes after drinking water or blended fruit or vegetable juices. I have been having to eat very small meals so that I don't exacerbate the condition, but I am not always successful and suffer just the same.
You mentioned a red knot on your middle finger...I have a knot that has been on my right hand (just btw the thumb knuckle and wrist) which I remember noticing just before I became very ill with vf, I've oftened wonder these last 17 months what it might be haven't shown it to an Md though...maybe I will...just to see what they say.
I do empathize with you and for sure the shoulder pain brings me to tears!
Peace and strength to you,
Bleu

I too, am very greatful for all the support from the wonderful people on this site.

[tinkerbell]

Hi Bleu, my left shoulder pain does not change with eating or drinking. It just hurts feels like when I move it certain ways it gets out of joint like I have to put it back in place. I have a very hard time lifting my arm up to shoulder level. I could not even think about reaching back to scratch my back and I can no longer unhook a bra or zip a zipper up the back. If I force myself to use it normally sometimes the pain just almost feels like its paralyzed or when you hit your funny bone and you have to wait for the normal feeling to return. I have had tendonitis in my right arm about 3yrs ago but that still felt different. I have to get the shoulder and finger imaging done this week and then they are getting the referral through to see a specialist for those issues. So hopefully we will both get some answers and possible relief soon. take care
Tinkerbell

[CindyinMN]

Hi Bleu,
I am anxious to here how your CT went and the results. I had an indium and bone scan after my CT. My doc was suspecting it had moved from the lungs into bone or muscle. The results showed activity in my spine so they ordered an MRI in my spine. The MRI results showed what "appeared to be" lesions throughout the spine that were just hemangomias. So they decided not to pursue any further tests. The problem with this MONSTER is that nothing really shows up until the damage is done. So that makes me worry that if they are not correct about those lesions and it is cocci I won't know until my spine is destroyed . In the past year my tests have also shown "what appear to be" cysts in my breasts and kidneys. I am a worrier by nature and hope that they are correct but it is always in the back of my mind. Let us know how your Ct turns out. I hope you get some answers and relief soon!
Never Never Never Give UP!
Cindy

[Bleu]

Hi Cindy,
I am thinking good thoughts for you. I know that it is difficult not to worry, I too am a worrier.
AT this time I still have no results from my cervical spine CT. I see the Dr. next week for that.
I had the endoscopy/colonoscopy done last week and won't have results for 2-3 weeks Dr. biopsied a couple of areas in my stomach
I was able to make an appt. to see this same Dr. that performed the endo/colon this friday because although I had no pain for a couple of days (probably due to being so empty)! once I was back eating the pain was back also. I am now logging when, what and how much I eat every day and just staying proactive.
As soon as I know my results I will let you know.
NEVER NEVER NEVER GIVE UP!!
Bleu

[Bleu]

Hi Cindy,

It's been quite a month here is the update on my test results.......
Cervical spine CT showed mild degeneration and apical lung scarring
Endoscopy/Colonoscopy normal
Stomach Biopcies normal
Gastric Empting normal

Pain in left shoulder/neck region still present
I have another CT of the chest and abdominal this week...this is a follow-up to the same CT done in February which showed something between my spleen and diaphragm, fluid in the region of my lung where the cocci mass was removed and a nodule in that same area.
I am also in the process of scheduling a Manometry test.
After I get the results for the CT and Manometry, my MD will refer me to a Laparoscopic Surgeon. Not giving up!
Bleu

[Angie]

Hi Bleu,
I am experiencing pretty severe neck, shoulder and upper back pain. All of my titers are negative and a Lumbar Puncture also came back negative for cocci.
I have been on Advil and Aleve for a while now but even these otc meds are not working. I have some strong pain medication, but prefer not to use it.
I will be going back to neurology and soon to rheumatology and pain medicine. Not really sure what could be causing this especially when everything is negative.
What is a "manometry" test?

Praying that everyone is well
Angie

[Budster]

Has anyone been sucessful in getting a medical marijuana prescription for pain?
_________________
Warm Regards,
Jerry

see my VF webpage here:http://www.budster.com/vf-01.htm

[Bleu]

Hi Angie,
I am truly sorry to hear of your pain and I understand what you are going through.....I was in soooo much pain last night that I broke down and took the pain meds that have been prescribed by my MD....at least they knocked me out....slept sitting up in bed
A manometry test is a gastric motility test..........they place a tube through the nose down into the esophagus and then you drink and they measure the pressure....
I had a CT scan done in February and it showed something between my spleen and diaphragm....and I just had another this past Friday....my latest CT of my chest and abdomen
Thus all the testing I've been through is a process of elimination so to speak....I will have a nerve function test this week and then the manometry....after the results of these tests I will see a surgeon but it is all dependent on what they find from my last CT.
Bleu

[Bleu]

You know Jerry.....my husband and I were just talking about that this week. :/