Raynauds Pain control

[BertieB_280616]

I have primary Raynauds, with several attacks daily. My rheumatologist said he isnt sure if it is or not due to lack of success with treatments; amlodipine, nifedipine, losartan, felodipine, fluoxetine (trial), sildenafil, iloprost and I'm trying naftidrofuryl at the minute with no success so far. My joints and muscles ache a lot, I'm tired a lot too and do struggle with chest pains (a&e couldn't find anything like clots and my ECG's are always fine). I don't really know what's next for my story apart from seeing a Connective Tissue Disorder specialist for tests in March. Looking for help with the pain for my Raynaud's, I've tried paracetamol, ibuprofen 200mg and 400mg and aspirin, had cocodamol 30/500 but I took a reaction to codeine.

[amd21]

Hi Bertie B,

Sorry to hear nothing helped so far. It looks like your rheumy has tried the meds but they don't always work for everyone ( they work well enough for me).

As well as crest and the fun that gives me i have bad pain from a fractured ankle that was rebuilt but is damaged.

Took nonsteroidals for years and ended up puking blood so had to stop them - I was on them as every opoid I've tried makes me feel worse than the pain...except the one that killed me! when I was in hospital I crashed due to pethidine and had to be resuscitated in theatre and my post surgical pain was only managed (I.e. not managed) by paracetamol & diclofenac not much help when bones have been broken, sawed, drilled etc.

I researched it and tried meditation as a long shot and haven't looked back really. It has totally changed how i relate to my pain and over the years the pain has more or less gone or rather I think my brain has learned that its just background noise like my heartbeats so doesn't pay attention to it.

Its good for stress too.

I can highlight some resources if you think that'd help, but not everyone is open to it.

Whatever you do I hope something helps.

Good luck,

Alan

[Hidden]

Hi Bertie B, I suggest 60 mgs of ginkgo biloba 3 to 4 times daily and 500 mgs Niacin 2 to 3 times daily. They are safe and the Raynauds association supports ginkgo biloba for Raynaud's treatment. Take care of yourself. God bless you .,

[Zazzel]

I saw that you have been posting with issues for some time and have tried many things. I'm sorry that you are having so many issues and at such a young age. I know you want to stop the pain, and I truly understand that, but please be careful how many NSAIDs you take as they can cause long term kidney damage. I have kidney disease as well as Raynauds and although I never took many NASAIDs and mine wasn't caused by that, there are some people in my group who did have kidney decline due to that. I would hate to add a new condition to your issues.

I hope you find a solution soon and start feeling better. Sending good thoughts your way.

[BertieB_280616 in reply to Zazzel]

I don't take any NSAID's anymore. I tried them for a short time but had no results so stopped instantly. I know the dangers with them as I work in pharmacy.

[Dizzy64]

Hello BertieB,

Having read your posting, and I am no health professional, I would be concerned at the amount of NSAID's that you're taking as kidney damage can be caused as was with my mother, who ended up losing a kidney ( not to scare you, just to make you aware).

For my Raynaud's I take Nifedipine 10mg 3xdaily and have been on them for nearly 4yrs and they seem to work fine for me, with my other medications as I have multiple health chronic health conditions. Before taking Nifedipine the pain in my hands was awful, nights I couldn't sleep and days, I wouldn't be able to anything. I do have weaknesses in my hands still, and can't hold anything for long.

I think there may be more going on and would see a connective tissue specialist.

Hope you gets answers soon BertieB,

Good luck,

Liz

[BertieB_280616 in reply to Dizzy64]

Hi thanks for the reply, I don't take any NSAID's anymore. I took them for a short time but when I had no results of pain relief I stopped them instantly. I'm seeing a Connective Tissue specialist in March so hopefully I'll get some answers then. Until then I'll keep taking my naftidrofuryl as a trial with an increase in dose from my doctor and hope for better results.

[rjericks]

Hey Bertie! So sorry you have not found the pain relief with all of the meds you have tried thus far. Some folks have reported relief with Rx LDN(low dose naltrexone), tho you may still have to combine it with other remedies. Hopefully, the specialist can help formulate an effective plan with you. Meanwhile, you can do daily Epsom soaks and supplement with oral magnesium for relief. Best of luck, xxoo