Dealing with acute pain

[Chanel]

Hi there, my Mum was diagnosed with Scleroderma 15 years ago however was bitten by a tick Christmas 2017 and its been a steady decline since then. She started the Minocycline & Clindamycin treatment 8-weeks ago and we know from this forum it takes time to notice any improvements.

The one thing we are really struggling with is acute pain throughout the joints and muscles in her entire body – to the point she can’t hold a glass of water or brush her teeth. I have to help pick her up and put her in the car or help roll her over as she doesn’t have the strength and it causes too much pain.

She was on Celebrex and LDN to help with the pain, however now she feels like it has caused her reflux to come back – something she had under control with nizac a few months ago – so she has stopped taking this medication out of fear it’s doing damage. Even on these pain killers she still was suffering pain – but at least it was tolerable and she could get some rest. Without them she can’t find comfort even lying down and says it isn’t liveable.

Mum is really high in food intolerances – she has tested highly allergic to all nuts, diary, grains, nightshades etc. and even foods she didn’t test allergic to – seem to be affecting her – causing pain when she eats them, sweating, rashes etc. This means she has dropped down to 42kgs also. I’m worried with the pain and her having little weight on it’s putting too much strain on her body.

Wondering if anyone else out there has suffered this type of pain – and can recommend any solutions.

Thanks,

Chanel

[Pinkmoth]

Chanel,
Good to know she has started antibiotics.

At the time when my inflammation and pain were at their worst, I took a bit of Prednisone. I took a very low dose, much lower than prescribed, and it reduced the inflammation enough to get through a very bad couple weeks. By then the antibiotics were starting to get everything under control. So I never took it again and hope I never have to. That drug really scares me.

I don’t think I was nearly as bad as your mother though.

As far as pain medication – as you may know, there are a number of studies showing that NSAIDs increase permeability of the gut lining so use of those would only exacerbate your mother’s food reactivity.

That leaves opiates (which come with the danger of addiction) and cannabis. I am intolerant to opiates and haven’t used cannabis so can’t speak to any experience with those.

Can anyone else chime in about pain management?

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[Lynne G.SD]

Cannabis oil works very well for many people.I do not need any but I make it for the lads that work in the lumber yard just up the road.They have terrible pain due to repetitive injuries.I started making it for my brother with pancreatic cancer and within 6 months he is in remission and doctors can’t find a trace of the cancer that had also spread to his liver in 7 places as well as his stomach.It helps if you know what kind of seed to but and are a bit of a scientist.Anyway,all my boys are doing great.I buy seeds that have a 1 to 1 ratio of CBD and THC as THC is a MUST for cancer and at that low rate one does not get stoned,nicely relaxed and minimal pain.Any chance you can get some for MOM?
I am sure that Maz will come along soon as she knows a lot about Lyme.I had it also and used 6 rotataing antibiotics,three at a time but mino was always one of them.I also used a few herbals and found that the only one that helped was Artimisinin.After about 4 years I was in good enough shape to only take 100mg mino or doxy every couple days for maintenance

[Linda L]

Chanel,
Is you mum gluten free?
How much of LDN is she taking and for how long?

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[greentrellis2018]

In addition to NSAIDs, I use a supplement called L-Agmatine. It has been very useful for lowering both pain and inflammation. You can get it on Amazon, and I like a a brand called —– (Brand name removed by admin)

There are quite a few articles about L-Agmatine on PubMed…here’s one: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC27068/

L-Agmatine doesn’t dissolve easily, but I’ve found if you mix in a little very hot (just boiled) water and swill it around it will disssolve nicely, and then I add a bit of cold water and swig it down. It has a chemically taste, but I just drink some tea/juice to get it out of my mouth.

Cheers.

Admin Reminder that first posts may provide the appearance of being spam (see forum guidelines), if there is no mention of an interest in AP for rheumatic disease but a supplement brand name and where to buy it is mentioned. Thank you for understanding.

--Not yet formally diagnosed with arthritis or scleroderma (scleromyxedema?).
--Main symptoms: Life-long whole body stiffness and thick skin; some Raynaud-like symptoms in fingers. Darkened skin on forearms. Fatigue.
--Started Minocycline Nov. 2018

[Maz]

Hi greentrellis2018,

I’m interested that you’re using L-agmatine. I did a little research and it appears to be a derivative of L-arginine. There have been some interesting past discussions about this supplement, because there is some debate as to whether or not L-arginine feeds mycoplasmas. I believe it is used to culture some strains of non-fermenting mycoplasmas in labs. Do you have any insights to share on this?

[greentrellis2018]

Hi Maz–

Thanks for this information. I don’t know if L-agmatine feeds mycoplasmas, but will continue to research the question.

I take agmatine intermittently when other pain relievers aren’t doing the trick.

--Not yet formally diagnosed with arthritis or scleroderma (scleromyxedema?).
--Main symptoms: Life-long whole body stiffness and thick skin; some Raynaud-like symptoms in fingers. Darkened skin on forearms. Fatigue.
--Started Minocycline Nov. 2018

[Maz]

Thanks for your reply, Greentrellis! Would love to learn what you find out. Are you suffering from a rheumatic disease and trying antibiotic therapy, too?

[jasregadoo]

So sorry that your mom is going through this, it sounds horrid. When my pain was at its worst, prednisone was my best friend. I stayed on it for quite a few months with no trouble. I know it is a dangerous drug long term, but it can really help get the inflammation under control when starting out. I know Dr Brown used it in conjunction with the Minocycline for many patients. Best of luck to you, and glad you have found the forum for help.

[greentrellis2018]

Hi Maz–

I am not formally diagnosed with Scleroderma or any other rheumatic disease yet. I have started antibiotic therapy on my own. I need to acquire a doctor who will prescribe antibiotics (following testing/diagnosis). I have lost the list of doctors for Arizona and California (I think I got it a year or so ago, but can’t find it now.)

I suspect Scleroderma. I don’t have any joint problems—my pain is actually in the muscles? tendons? with thick skin… I have a lot of questions, but am also autistic (Asperger’s) and this compounds my problems in communicating clearly with doctors about all the symptoms and advocating for myself.

I really think this is a very supportive forum. Hopeful and supportive.

Thanks.

--Not yet formally diagnosed with arthritis or scleroderma (scleromyxedema?).
--Main symptoms: Life-long whole body stiffness and thick skin; some Raynaud-like symptoms in fingers. Darkened skin on forearms. Fatigue.
--Started Minocycline Nov. 2018

[Maz]

Greentrellis, did you find the Doctor Search Page okay? You can request the lists for CA and AZ again as well as a third list. In CA, there is Dr. F. In Riverside who takes some insurances and who is a rheumatologist – he’s considered to be “most experienced” AP doc on the west coast. If you have used up your three list requests on the automated system, I’d be happy to send you the lists again in a private message. Just let me know.

Click here for Doctor Search Page.

Yes it would be ideal if you could get a diagnosis in order the get a protocol tailored for you by an AP doc, as it’s quite important to get regular blood work to ensure all is well while on the therapy. Would be a shame for you not to succeed otherwise. Wish you the very best!

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