Pain is almost unbearable

Submitted by Lynnp on Thu, 2009-10-15 19:29
Just wondered if anyone else has/had pain in shoulders and neck that is constant?  I used to hurt all over but the last few months have horrible pain in my shoulders and neck.  I'm going to physical therapy twice a week and doing exercises and nothing helps.  I use Biofreeze constantly and walk around with an icepack on my neck and shoulders most of the time.  I take a lot of ibuprofen.  Anyway, my question is, do you think it is infection that has moved more into this area?  I've always had pain in my neck and shoulders along with most of my body but the neck and shoulders are worst than ever.  I'm still on my cap, about a year now I think.  I just started Quercetin so maybe that will help.  I seem to get very swollen too.  Any ideas or suggestions?

Lynne, have you tried a hot bath with 3 cups of Epson salts? The magnesium should soothe your nerves and blunt the pain response. It really works for me. You have to soak up to your neck for at least 20 minutes or longer. Light some candles, play some soft music and take deep breaths. Let me know if it works for you. I usually follow up with a thick robe and a heating pad under a quilt. If you fall asleep, this is good.

Ice doesn't do anything for my pain and I have had lots of it in the neck and shoulder area. But heat on the other hand, does the trick.

Raven

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

Lynn

All I can say is - it's working, it's working! Many, many nights and days I could not move my head without incredible pain. Indeed, it hurt even when I didn't try to move. And my shoulder - same. And my hips. And my hands. I say never miss a dose, take your supps, grit your teeth, and get through the next months or years. Whatever it takes. Not easy - none of it is. But... it's harder on the bugs. And Raven gives good advice - hot baths are the only thing for me.

Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Thanks for the help guys!  Only problem is, part of the back of my head hurts from the neck pain so I may drown myself in bath water!!!!  I'm going to try heat again.  I used heat for many years but this physical therapist said try ice.  The ice just numbs the pain for a little while.  I thought I might be getting to the bugs!  Hooray!!!

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

Lynn, I found great  relief with Lidoderm patches (script). Hot baths definitely helped but sleeping with the patches helped me the most. 

Something else that does work wonders (better than Biofreeze) is Kwan Loong Oil.  It penetrates deep into the muscles and can be ordered from the Net or some health food stores have it.

I do not have FM  as severe as I did a year ago but still do occasionally have to use the patches.   There were many days I could not turn my head and had a lot of pain in my head, neck, and shoulders (as well as other places). 

I hope you find some relief.

JeanneRoz 

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Thanks JeanneRoz.  The last 6 months or so my neck started crunching.  Hurts to turn my head.  Walk hunched over most of the time.  I do used Lidoderm patches some.  I will use some after physical therapy tomorrow.  Duh!  I forgot them lately!  This fibro is making my memory horrible.

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

Lynn, I have constant neck, shoulder area, and upper back pain.  I always related it to my work, which consists of heavy duty computer use.  In 2000, I even had surgery to fuse two discs in my neck that were collapsing and compressing my spinal cord.  The surgery was a success for repairing my spine, but it did nothing to improve the pain.  Physical therapy, heat, and stretching didn't help.  I went to a physiatrist who just wanted to give me drugs.  I dutifully tried muscle relaxers and pain killers with no effect.  He wanted to inject botox into my tight spots, but I knew that wouldn't be a permanent answer and so declined.  When nothing he did worked for me, I was dismissed.  I saw a psychologist who thought I could "tap" away the pain.  I couldn't, but the tapping was soothing! 

Finally, my MD suggested acupuncture.  I started seeing the acupuncturist and found I very much enjoyed it.  What really helped, though, was when he used "moving cups."  He used the suction cups used in cupping but moved them up and down on the areas of my upper back that were so tight.  I finally found relief for my constant pain.  If not for that, I don't know if I could have continued at my job.

Sadly, the acupuncturist has moved on to a bigger city, and I can't make the trip to see him any longer.  My constant pain is back, but so far it's not as intense as it used to be.  I'm hoping that the Cpn infection is part of the cause and that the CAP is beginning to help.  The pain is always there, though.

If you can find a good acupuncturist in your area, I'd say definitely give it a try (if you haven't already).

ME/CFS since 1991. Cpn diagnosed 6/07. CAP started 7/07. NAC 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyl to Tindamax 500mg 2x per day for 5-day pulse.

Lynn, Using Ben Gay on the effected areas will help a lot. Taking ibuprofen just before using the Ben Gay will help even more. I should add that this might exacerbate the pain for a week or two before it begins improving. However since you are already having a flare up, the exacerbation will probably not be noticeable for you. BTW Chlamydia did not just move to your shoulder/neck area. You (and most everyone) have a Cpn infection in areas that are regularly damaged. These areas can vary from person to person but almost always include joints such as lower back, shoulders, and neck. The reason for this is the Cpn is transported by white blood cells and WBC's move to damaged areas to clean up and repair the damage. Joints that receive a lot of stress are therefore almost always infected. - Paul

Paul, I use Biofreeze.  Ben Gay is heat right?  You sound like a doc.  Very knowledgeble.  Thanks for the info.  Makes sense!

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

Lynn, I agree with Paul very much. I also have chronic pain in my neck, shoulders, and everywhere else. It is terrible, Ben Gay helps a lot after it's applied. See if your physical therapist will work it in your traps. for you and also do some very gentle stretching. Are you using glucosamine? Glucosamine has helped me very much as well. Hope you get some relief soon. Best, Patti
FMS,CFS, 15 years,CPn antibodies,mycoplasm pn.,leison on posterior pituitary. Started CAP end of Dec. 08 mino.100 daily, azith. 250 MWF all supplements,compounded T3 therapy.

Lynn

My husband and I were just talking about this a few nights ago.  I had terrible neck and shoulder pain for a number of months.  It actually occurred before I started antibiotic therapy.  One of the things that helped me the most was massage.  At first I needed to go twice a week, then moved to once and then slowed down more after that.  But it took a few months.  I know it is expensive but it was the best money I spent as it brought relief.  You need to make sure it is deep tissue massage, not just a simple "feel good "  massage.  I actually was sore the day after the massage at first.

 

When it was really bad and before the massage therapy kicked in I actually took muscle relaxants to help (prescribed).  That may help you also temporarily.

 

I know how it is-you just want some kind of relief.  If I remember anything else that helped I will let you know.

 

Good luck

Lori

 
Started Vanderbilt protocol 1/9/08  Rifampin once a day, b12 injection monthly , vitamin D 50,000 IU weekly

I go to physical therapy twice a week.  They do ultrasound with heat and then deep myofacial release trigger points and massage.  Then heat for 15 minutes with a cervical collar with heat also.  She really worked me over today.  Eventually it will get better I think.  I think this is my 14th  visit so far?  I've taken Flexeril for years and now percocet some.  Mostly ibuprofen, biofreeze, and heat.  A friend told me about someone here that does deep tissue massage so I may try to do that when my insurance quits approving visits to physical therapy.  Thanks for all the concern.  It really helps to know that other people understand.  My family doesn't.  Lynn

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

Hi Lynne, When my pains were much worse than currently I used to have lymph drainage massage therapy  with different essential oils as appropriate. As well as shifting lymph it also reduced the pain from inflamation. On one occasion no essential oils were used. That massage had no effect on pain or fluid retention, which really surprised me & let me know for sure that it was the essential oils which made the difference, not just the feelgood factor of personal attention & fragrant aromas.

I've been using varying mixes of good quality essential oils [no chemical imposters] in my daily long, deep, minimum 10 minute, ideally 30mins. bath for over 15 years to remedy all sorts of imbalances, as well as debilitating pain. It's been a very important part of improving my functioning as well as helping me to remain far more positive.  A friend with similar health challenges & fibromyalgia also has improvement from a long soak with ess. oils & epsom salts.

Magnetic therapy has contributed to pain reduction. I have a pad on my mattress which improves relaxation. When the pain has been worse a magnetic collar covering shoulders has been very effective.

I'm sorry to hear your family don't understand. You're not alone there. It seems most people don't/ can't/ won't until they have first hand experience of something similar 24hrs. a day.

Best of luck with finding what works for you.  H.

 

 

Not sure if this is the cause but both my wife and I got terrible neck and shoulder stiffness/pain with excessive thyroid hormone.  I notice you are on Armour.  You might try dropping it for a week, see if you improve. 
Blogger at http://perfecthealthdiet.com. 17-year chronic illness cured with diet and antibiotics, nearly fully recovered.

Lynn, IMO, Contrary to PaulJ's suggestion (and not to be argumentative)  I would not be lowering your thyroid meds.  The pains you are describing could also be symptomatic of not enough thyroid hormone (hypothyroidsm).  I am not a doctor but coming from 10 years of experience (on Armour) of all the terrible symptoms and medication issues of NOT having a thyroid and keeping myself optimized on my medication. 

Are you taking Cortef AND Armour? I see them both in your signature.....

 

 

 

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

 LynnP,        I agree with JeanneRoz, going off your thyroid hormone without consulting your Dr. could cause even more pain. That happened to me recently as I was busy and neglecting my thyroid meds, all the terrible back pain I once had came back with a vengeance. Ask you Dr. first. Hope this helps. Best Patti
FMS,CFS, 15 years,CPn antibodies,mycoplasm pn.,leison on posterior pituitary. Started CAP end of Dec. 08 mino.100 daily, azith. 250 MWF all supplements,compounded T3 therapy.

I carry stress in my neck and shoulders anyway so I had pain before I started the thyroid meds.  It has just gotten worse since I started on CAP so that must mean that it is working.  I do take cortef for my adrenals also.  I was hypothyroid.

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

Hi, Lynn... I take Cortef and thyroid as well.  For some reason when I read you sig block and saw Cortef I was "thinking" T3... egads! 

I recently had to change thyroid meds due to the Armour shortage (plus I was unable to tolerate Armour's  "new" formula before it became unavailable!) and started having more intense FM-type symptoms and pain until I got used to the new meds.  

 

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

jeanneroz, I am now on Westhroid.  I really need to look it up.  I just assumed it was a different type of armour.  How much cortef do you take?  My doc put me on 25mg a day and I lowered it to 12.5 a day because I was afraid that I would gain a lot of weight.

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

Lynn, I  am now using  Nature-Thryoid which is the same as Westhroid (both made by RLS Labs).  Are you still able to get it because last I heard there is a shortage/backorder situation that won't be remedied until at least the end of the year. (Luckily, I stocked up since I have no thyroid and can't live without it!)

I take 20 mg of Cortef (5 mg 4X/day) and yes I gained "belly fat"  (that whole darn cortisol/infection loop thing) BUT, Cortef is what literally got me out of bed and my orthostatic hypotension in control -- it took a while, though. 

 I would love to titer off it but my adrenals are telling me they still need it.  I can't really say the Cortef was the sole factor in my weight gain because I had about a year and a half of being pretty much bed/home bound and not much physical activity (even walking).  My body is telling me I still need it and I've been on it over a year....

 

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

So many of us on CAP get worse on a continuous basis.I'm included.

How can we remain sure that the getting worse means that it's working?

I seem to need constant reassurance to believe this.

Help me!!!!!!!!

diagnosed MS Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxy 100 mg. 1BID. roxy.150 mg.? BID,adding rifampin soon, pulsed tini. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDN),NAC, nystatin, major wheldon supplemrnts daily,