Extreme pain with no end in sight!!! Please give me hope!!!

You poor thing! I can't relate, but I sure wish you good luck and relief!

Cosmogirl,

I,, too, have been racked with muscle spasms and seizures. Some nights, the mere act of lying down in bed starts my whole torso spasming. My MO has no idea what is causing it, as my blood work is just fine.

When I first had chemo, the muscle spasms were smaller, but lately they've been huge. It's like being in labor, except that they mainly occur in my torso. And, they can be relentless.

To keep them under control, I've been prescribed Flexeril (cyclobenzaprine). I take the maximum dose when it is bad. I also take a potassium and magnesium supplement, and can really tell the difference when I've run out and failed to take them. After taking the medication, I find it useful to stretch. Can't do it unmedicated, as it'll start the spasms up.

Ask for some Flexeril, take potassium and magnesium supplements, and make good friends with heating pads and blankets. When you've got it managed, try to get some exercise daily. It gets much worse if I don't walk at least a mile a day. God, much worse. Seriously, walking helps.

My personal belief is that it comes from some sort of nerve damage from the chemotherapies I've been on. When I can manage the spasms, I find it an even trade. Hey, I'm still living. But, when wracked with pain and unable to even sit comfortably, I re-examine the bargain.

Hope you can get relief soon. We are all pulling for you.

Jennifer

Hi there!

The first rule living with chronic pain is to be proactive. You should be taking your painkillers before the pain peels, and in many cases even starts.

I occasionally have knee joint pain so severe, I cannot stand up by myself. I use fentanyl patches right on my knees, in addion to lıw dose morfine and codein.

Drinking coffee helps the painkillers become more efficient.

My pain docs rock! Their main concern is my QOL.. Not that I become a junkie.

I reguarly use Lexapro & Xanax which also help keep sane and relax even sleep most of the time.

I cannot promise you heaven, yet I figured with experience an MBC patient does not have to suffer with pain. Proper professionals DO help. I also have Tramadol prescribed regularly.

Chemo pain, rads pain, mets pain.. AIs pain.. All can be kept under control

Now........

After MBC dx you have to adapt to your new normal. You do one activity per day, delegate as much as possible everything at home/work.. Have regular naps and regular walks outside which help the body gain and use energy properly.

Your mood meds should be prescribed by a psychiatrist, they know the stuff best.

Detoxing your life from negative environment / people regardless of how close they are is a must.

Mood is the most efficient therapy.

I have extensive bone/marrow mets, pleural effusions, kisney &lung liver & brain issues.. And still smile after almost five years:)

Take a deep breath and start, girl!

Hugs& love

Ebru

Ebru, I love you. You've provided--along with the all the others who responded--great coaching for cosmogirl!

Tina (who is toddling along after all these years)

cosmogirl, are you taking Tamox AND Aromasin? I couldn't tell from your signature if you were taking both. You mentioned Tamox.

The ovarian suppression and both Tamox and Aromasin can cause aches. I don't mean mild discomfort. I had to stop Aromasin because the pain from the resulting estrogen loss was greater than cancer pain.

You say you are stable, which is great, but your body has recently endured quite a bit of surgery, chemo and radiation. Healing can take more than weeks or months.

If I were you, I would ask my pain management team if they have experience treating others in my condition. Reasonably healthy Stage IV patients may be a rarity for them. Ask if they can recommend other pain management professionals who take care of Stage IV breast cancer patients. You may need healing help from others associated with larger centers (if you live in a smaller town.) You might also ask about clinical trials for pain, ask whether your quality of life SHOULD be better, based on your treatment and current status. I do not agree with the blanket assumption that higher levels of pain medicine make you sleepy/drowsy. I'm not sure if that's exactly what your doctor meant. Just speaking from my experience, higher doses of most opiates haven't made me sleepy or drowsy. Would it be worth trying on a short term basis, just to see if pain relief could be achieved?

You have tried many methods of healing and pain. That is admirable. Other treatments that come to mind are yoga, Pilates, water exercise, lymphatic massage and steam baths.

Good luck to you. I hope your pain decreases quickly.

dear Fitz,

I was thinking the exact possibility as almost no response to such good meds and all. DH has rheymatoid Arthiritis... Not fun at all!

It's great that your wife's a pro in all these supportive methods.. Just my MO's two cents.. As the lymphetic system is the highway for the c-buggers, massaging etc is strictly forbidden -in my case- to avoid promoting their options for further invasion of the body.. Of course this is a view in my case / specific condition..

Dearest Tina, you all have been such great sisters over the years for me, I sincerely hope to be of some help if possible.. İn any way possible )

Arthiritis along w/ MBC is no fun at all, especially in the inflammation period, during which massages etc (esp spa) should be avoided.. Do hope your is not the situation Cosmo, if other sisters reading this have such a condition, this is my country's top notch dr's strict view.

My current codein based formula works wonders even alone.. Which of course I cannot share here due to ethical reasons. I suggest you do ask for it from your Pain Team. I have experienced 8/10 pain , confirmed by drs.. No more of that any more.. Lucky me

Since dx, there have been many occasions conforming drs and Current medical protocols in my country are in fact much preferrable / eveb considered better than many leading countries of the world. I try to post based on scientific evidence and admit I am lucky to have the best team of docs (teaching professors / among few in the world) so I do hope my mention location does not seem odc in any way to you dear Cosmo

Hope for better days for you.

Ebru

Hi Cosmogirl, I was just reading this article and thought of you. I know it is from 2010, but it could still be something to ask your pain team about. It is about using steroids to help with pain relief.

I'm not stage 4, but hope y'all will forgive me from posting. I am going to suggest you get your enzyme pathways tested. I had horrible pain that oxycodine couldn't control - nothing worked. I paid $150 to Kailos Genetics for their complete genetics testing on the medicine pathways (I mostly did this for Tamoxifen) and come to find out, I'm not able to process most of the major pain drugs due to a double mutation on the pathway those pain meds use. Now that I know this, it makes sense why my pain was never handled properly... and there are alternate pathway medicines suggested that the docs never considered.

You get a 60 page report that goes into all the different pathways and which ones work for you or not. I highly suggest those who are struggling with medicines to get it.

https://www.kailosgenetics.com/pgxcomplete

Blood tests

People with rheumatoid arthritis often have an elevated erythrocyte sedimentation rate (ESR, or sed rate) or C-reactive protein (CRP), which may indicate the presence of an inflammatory process in the body. Other common blood tests look for rheumatoid factor and anti-cyclic citrullinated peptide (anti-CCP) antibodies.

Imaging tests

Your doctor may recommend X-rays to help track the progression of rheumatoid arthritis in your joints over time. MRI and ultrasound tests can help your doctor judge the severity of the disease in your body.

Please discuss the possibility of methadone (either pill or intravenous if needed) with your pain management team. It was the only thing that gave my daughter relief and yet still let her function. I wish you all the best.

hi cosmo,

Glad you have the pain clinic taking control.. I use Fentanyl patches myself, the lowest dose.. still. Helps but not as effective alone as the rest ..

tramadol with it (I am on 100mg) works eay better. Tramadol is not friendly to many, I am among the lucky ones to have bearable SEs.. but admit it IS harsh on the kidneys..

codein based formula was prescribed by my pain doc and the pharmacist prepraed it into capsules. Well the formula is prescribed according to your own conditiın.

I open the capsule and have the powder under my tongue 2-3 secs before gulping with water. The fastest relief ever!

I also use Jurnista 8 mgs currently.. low dose morphine.

Not using any of these regularly, rather according to my pain level.

Healing hurts as well. Keep in mind there's a battle in your body!

I enjoy my cup of coffee right after I use painkillets, as it helps the drugs acting more effectively. Learned that from a med article.. the caffein works in harmony with the painkillers.

So much experience and info since dx! Hope You find rrelief soon. Remember: one activity per day, daily afternoon naps and feet up whennot have to be standing up. I sit on the backseat of the car not next to hubby mostly, for instance..

you take care of ypur body as a baby's! )) the less forcing, the better you feel. And keep waşking.

Hugs Ebr

Cosmogirl, that's awesome. Pain is so depressing and fatiguing. I hope the relief keeps coming!