Been awhile MS SUCKS

[isamadjul]

I've not posted in...A LONG time! So HI again lol.

Coming up on 8yrs DX this Oct and I feel like crap. I'm struggling getting my pain managed and not going nuts!!

As of late my calfs have been KILLING and the only time I'm pain free is 2 Norco, 4 Ibuprofen=800mg and an extra 500mg tylenol. But whats the trade off? No pain! Sick to stomach. Exhausted. Can't think. Makes my bad get worse. But NO PAIN!

I'm already doing 80mg of baclofen, 3600mg gabapentin, 90mg, cymbalta, 100-150mg trazodone, vit D, vit C, turmeric, norco 325-5. I'm DYING daily in pain!! Neuro PA and PCP don't seem to understand and I NEED RELIEF! I'm also taking so much med wise for pain that now I'm also having potty problems. Ugh what did any of is do to get this horrible disease???

Please help with ideas for my to tell/ask the pcp and neuro!

Thanks much,

Allyson

(Ps i also can't read as well as i use to so sorry for any and All typos)

[msgijo]

I've not posted in...A LONG time! So HI again lol.

Coming up on 8yrs DX this Oct and I feel like crap. I'm struggling getting my pain managed and not going nuts!!

As of late my calfs have been KILLING and the only time I'm pain free is 2 Norco, 4 Ibuprofen=800mg and an extra 500mg tylenol. But whats the trade off? No pain! Sick to stomach. Exhausted. Can't think. Makes my bad get worse. But NO PAIN!

My feet and calves also give me terrible pain - usually when the dew point / humidity is high (higher than 65). Mine is caused by Spasticity. I too have tried an assortment of different medicines in an attempt to stop the pain, and the one that worked the best was Baclofen. The Baclofen will cause drowsiness when you first start taking it, but I (and most people) get over that side effect within a month or so. I take 10 mg every morning and cannot feel the sleepy effects at all.

I recently added a magnesium lotion (OTC) which also helps. The como stops the pain enough for me to feel close to normal - my MS normal .

I take 10 mg Baclofen every morning (hurting or not) and take another 20 mg (IF needed) around 2-3 pm. I take 20 mg baclofen at night along with 800 mg Ibuprofen. I use the lotion when I have breakthrough pain.

You may want to try this combo to see if it works for you as well as it does for me.

Good luck !

[SNOOPY]

Hi Allyson, glad to "see" you again, sorry for the reason.

Is the pain you are experiencing just your calf or is there more going on?

Your calf pain is more than likely spasticity. Have you tried massage therapy and/or physical therapy. I found Massage Therapy helped reduce the knots I get on the upper part of my leg as well as the stiffness.

[Myoak]

Bless your heart.

I am so, so sorry for the pain you are suffering. Please know I am praying for you in this very moment for relief and that you find a way to resolve it.

I don't know what DMT you are on currently but perhaps a more effective one might help. Some people have lots of gastro problems with Tecfidera, and the meds you described can certainly contribute, also, as you know.

You could try LDN, Low Dose Naltrexone. I have attended lectures by Ivy league doctors using LDN for pain management. Study it and see what you think. There is lot's of info here about it and not one single serious adverse event can be found in medical literature from either a child or adult using LDN. I personally spoke with a researcher from Penn State, Dr. Jill Smith using LDN in children with Crohn's Disease. Not one serious side effect there, either.

It is normally a long and useless endeavor trying to get find doctor to prescribe it even though thousands, if not 10's of thousands of pwMS use it.

It was inexpensive and easy for me to buy naltrexone online in 50mg tabs, crush it, weigh out 2mg (the dose I use) with a small scale bought on Amazon. Empty gel caps are sold there, too. I have purchased naltrexone from 3 different pharmas online without a prescription and never had difficulty. It comes individually sealed in foil.

If you have 6 prescriptions on your shelf read who the manufacturer is, its required on the label, and look them up. I bet some of 6 are India pharma companies.

I had to laugh when my GP (she refused to prescribe it) warned me about not getting naltrexone from India. I take a statin. I went home and looked at the manufacturer... it was a pharma in India. The very thing she scolded me not to do she already had me doing... taking a drug from India.

Seriously, Walgreens, CVS, Rite Aid, all US pharmacies buy drugs in bulk from India and put them in bottles for customers. I think it is safer to buy them in foil stripes than loose in bottles. Honestly, it just has to be safer sealed at the manufacturer than loose, counted out in a tray, and put in a bottle.

I know several people, including myself, who have taken LDN for years. I believe it is a benefit. But please study it yourself and draw your own conclusions. It is not a cure but it may help, and possibly a great deal.

Dear Lady, I hope with all my heart you find the relief you seek.

[isamadjul]

I'm just feeling lost

Most anyone with MS gets that pain is a big part of our lives. The fact that when they ask my pain and I USE TO answer "I live at a 5-6". Problem now is that I feel like I live at a 7-8 daily!

I'm so lost because of the pain and no relief unless I'm high as a kite. 😢 I'm worried to go to a pain clinic because of my 8yrs on Norco. I can live without taking daily but IDK if I live without it. The little relief I get from it keeps me from not ending it all. When all u see morning, noon and night is pain...dark days!

I take 10mg am, 10mg noon, 20mg dinner time, 40mg bedtime of Baclofen and if I'm honest it doesn't seem to do anything. I'm SURE it does but since I'm always in pain.

Yesterday when I took all that I was at a High School Tennis tournament. I mean I can't even enjoy sports without pain. (Pain from spasticity bot sports lol i like sports).

I'm on Ocrevus for my DMD however I can't really switch to another cuz there's not a ton left for me. This is my 5th drug and I've had problems with all but this one. So far. I know there are more then 5 drugs but for various reasons this is MAYBE my last one.

I demanded a new MRI in hopes for lesions to explain a few things. Alas nothing was new which equals the new stage for me. I'm advancing and the guess will be what is next. At only 39 I was hoping for a few nore yrs before this started to happen but...

I was told by my orginal Neuro that I'd be lucky for 10yr. Her reasoning qas what my MRI have said from day 1 really. I saw my pcp on Mon, Neuro Tues, MRI Wed and a probable dx same day. They waited for the spinal to say 100% so i was dx in less 2 wks. Got disability after 4months and my review took less then a month this past July.

I live my life with my kids and hubby that I will be walking and enjoying everyday. But...I'm enjoying less and less do to the spasticity. That's what's killing me. I can't walk like before because of tiredness but I also get massive leg pain/spastic just walking often. How do I live life like that?

Sorry long winded today as I'm just laying waiting in pain for the pain to poof away. I'm still not feeling right after meds from yesterday but yay the pain made it back at least 🤦*♀️

Allyson

[SNOOPY]

Allyson,

Muscle relaxers usually do cause fatigue which can cause problems with quality of life (for some). Add in your use of opioids and well, the fatigue is magnified. Opioids really isn't the answer for spasticity and the pain it causes.

I have NEVER had opioids help with spasticity or the pain. I have used opioids several different times due to surgeries. I still notice the spasticity and pain on opioids, but I simply don't care. I can't take muscle relaxers on a daily basis, I end up with what appears to be Narcolepsy. Once I stopped taking daily (60mg) Baclofen I had more energy.

There is no magic pill for spasticity but working with a Physical Therapist(PT), Massage Therapist(MT), and gentle stretching exercises can help decrease spasticity and the pain it causes. Please speak to your Neurologist about PT/MT.

[Jules A]

Muscle relaxers usually do cause fatigue which can cause problems with quality of life (for some). Add in your use of opioids and well, the fatigue is magnified. Opioids really isn't the answer for spasticity and the pain it causes.

I agree. Opioids aren't the answer for any type of long term pain imo. There is zero research that indicates they are helpful long term and the detriments are numerous including the impact on mood and energy. Anecdotal but I've seen a number of people who were on high doses of opioids for years that were slowly weaned off and if their pain was a 6 or 7 on the oxy etc it remained a 6 or 7 without it and yet they were less depressed, less sedated and could poo again. Overall they continued to have pain but their quality of life actually improved. They also tended to attempt non-pharm interventions such as PT, acupuncture, mindfulness etc.

[pennstater]

I take Baclofen and have had PT for my calves. There are 3 exercises I do at least 5 times a week. The days I don't, the pain comes back. It will intensify if I skip 2 days in a row and incrementally keep getting worse. I sometimes put heat on it, stretch, exercise, then put ice on it.

One other thought. Have you had your gait assessed? Any chance you may need orthotics or something? Other things can contribute to pain.

Hope you get relief.