Pain Relief

[LadyKane]

I'm writing here because I'm really at a loss of where else to ask....

A little back story (which is all a bit complicated)...

I am a 31 year old female. I have a family history of Connective Tissue and Auto-Immune illnesses on both sides of my family. My grandfather died after suffering from severe RA. My grandmother has lupus. My mother had Guiallme-Barre syndrom when I was a child. I suppose I've always suffered from aches and pains and often just came across as a massive hypochondriac. I had top stop playing many of the sports I enjoyed as a kid because of the severe pain in my spine (and was diagnosed with Schuerrmann's Disease).

When I was in my mid twenties I became quite ill, but after many visits to my GP I was told it was nothing (in fact she said it was in my head and I should see a psychiatrist). A few days later I was taken into hospital to have emergency surgery, having to have my gallbladder removed as I had so many gallstones they had blocked my bile duct and caused pancreatitis. About two years after that, I was diagnosed (along with my mother and brother) as having the genetic auto-immune illness Haemochromatosis (too mch iron in the blood). If you don't know about it, it can cause heart, liver and kidney failure (death in extreme cases) but more generally conditions like Raynauds (which my brother and I have), Gallstones and Kidney Stones (of which I've had both), fertility issues and a host of other things. I'm currently being treated for it and life is much better as a result.

Unfortunately, however, I have recently (past year) started developing extremely severe pains in my hands and feet. My wrists and ankles are often in pain too. The swelling is unreal, sometimes my fingers swell so bad I can't hold a pen or cup of tea. It flares up, sometimes are worse than usual. Now, in the past 6 months or less, I've started noticing the shape of my fingers changing a lot. Two of my fingers in particular are completely shifted and bend to the side. My pinky fingers are also wider from my hand. In short, they just look very different and my family have noticed it too.

I have been referred on the NHS to Rhuematology, but I can't stop worrying about what is to come......if indeed this is RA. Given how much my grandfather suffered before his death, it scares me so much. I'm an artist, so the idea of having an illness that is effecting my ability to work is causing me to suffer great depression.

My question, however, is more about pain control....

I have two big promlems when it comes to controlling the pain.

1) I am severely allergic to ibuprofen (and found out the hard way....a few times).

2) When I was suffering from pancreatitis/gallbladder issues, my doctor put me on very high doses of Fentanyl and Oxycontin and Tramadol, all of which were often over prescribed in high amounts. As a result I fought a battle for years (one which I will fight the rest of my life) with opiate addiction, addiction to doctor prescribed pills (from a girl who never messed with drugs before).

So, now here I am, yet another illness - although I am aware that they are all connected - but with no ability to take any pain relief. It's not great and is causing me great levels of anxiety, stress and depression.

Sorry this is all so long and boring and no doubt makes me sound like a real hypochondriac. But I had to vent.

Thanks for reading.

[KSee]

Hi...sounds like you've been through a lot and I'm sending you 🤗🤗 and good wishes for your dilemma with pain relief to be resolved soon.

[ORXTEN]

Stay away from NSAIDS like Motrin or Aleve and all the others.

Opiates are in my opinion the best meds for pain control / long or short term. You need to find the Meds that work for YOU and start with low dose at first. If you get any relief it's a sign that you're on the right track.

If you need to increase the dose do it slowly. Try a Short acting and a long acting drug and give each change at least a month. Opiates must be used with NO TYLENOL or ASA. It takes time to find the dose that gives you a life. I've been on same high dose for 10 years and I'm very active. The right Dr to help you is very important to help you control the pain.

Lastly - stay in good shape - walk a lot if you can Stretch use weights even 5 pounds will help but you must stay active and productive.

I've had 11 operations and I've tried it all Chiropractic Accupuncture Relaxation Massage etc etc They all help a little. Stay positive Stay active Stay on track to just take it one day at a time. It's a war and you can win. Find a Dr that wants to help you and believes in you.

After 30 years of this I've learned a lot and you are the one hurting so you take charge of feeling better. It's ok to be mad and angry but use that energy to fight the pain.

Good luck

John S

[Witness2]

I'm so sorry that you're having to endure one thing after another - sounds like a lifetime of pain and anxiety. All I can add to the replies so far is that RA is not necessarily as dire as it was in your grandfathers day. The drugs are much more sophisticated- but it seems to take some of us a while to discover those which work for us.

I recognise what you describe happening to your fingers, sounds just like what I went through and coincidentally I too worked as a graphic artist. I couldn't continue sadly but I found another career which turned out to be just as satisfying. It sounds so trite but I do hope you feel better soon.

[helixhelix]

The world has moved on since your grandfather's day,when there were few effective treatments. These days it's much, much rarer to get the deformities that artists such as Renoir and Burra had to suffer. And life expectancy is pretty much the same as the general population. So please try not to let that haunt you.

I well remember the horrific pain I was in when finally diagnosed - couldn't move, sleep, dress myself etc etc. These days I don't need any pain relief on a daily basis as my disease is well controlled. Be aware that this forum isn't entirely representative as quite understandably it tends to be used more by the people with the most difficult disease, and the newly diagnosed. For the vast majority of us life gets back to 95% normal.

But for now I sympathise as it's horrid! For pain have you tried all the non-chemical approaches like heat packs, ice packs, green lipped mussel gel,wax baths and so on? Body pillows can help you sleep. You may also need to have resting splints to support your hands - ask to see a physiotherapist or occupational therapist.

I would also suggest that this is the moment to look at your lifestyle and make sure you're doing the best you can to support yourself. So make sure you keep moving, gently of course, but it can really help. DIet as well - there is a lot of heated debate on here about detailed diets, but it is always worth a try to clean up your diet and doesn't harm. Even simple steps like removing processed food from your diet can help. And then rest, you do need to let your body have proper rest to tackle this - you may well find that your flares are worse when you overdo it?

There is an artist on here called Jora - look up some of her posts as she's working away despite everything as she has a difficult version of the disease.

Stay as positive as you can, your fears are probably far worse than what your reality will be.

[Joodee]

Hi, sorry to hear that you have had so many problems. It doesn't sound as if you have had an RA diagnosis yet and if it is confirmed you will have many effective treatment options which are not just designed to relieve the pain but to actually damp down the action of the disease and therefore stop the pain. As others have stated, the treatment for RA has improved hugely over the last few years, I have had it for 30 years and my father had it too and the difference in outcome with the newer drugs is remarkable. Don't imagine that your experience would be anything like your grandfathers. Your GP has done the right thing in referring you to rheumatology, many people struggle to get an early diagnosis, good luck and use the NRAS resources to the full.

Julie

[popsmith1874]

Christ you have been through the mill and as others have said things have moved on and the drugs now are a lot better it's just getting the right combination so keep fighting and don't let this horrible disease get on top off you things will get better

[denvajade]

Hi you have a lot on the our plate! I have fibro, RA , chronic depression and a severe gut issue, last night I read on this site about a man who treats himself naturally, his name is Clint Paddison, look it up on google and see what you think!,

[scotslass333]

Wow - all I can say is that what you have to cope with has certainly made me realise how little I have to complain about......sending you warm thoughts. xx

[Nettac]

Hells teeth, that's a lot to cope with!

Sorry your doc didn't listen at the start. I've had the brush off a few times.

I know what you mean about your fingers. The same thing has happened to my toes (psoriatic arthritis).

I used to be on a shed load of opiates before diagnosed. I was pretty much addicted. However, since treatment I take very low dose codiene with paracetamol. I try not to take nsaids, as they're evil on the gut!

I've gone from being unable to even roll over in bed, to being much more mobile and active. I did take time to find the right meds.

Be hopeful. Things have improved a good deal for folks with autoimmune issues.

Look after yourself.

[Simba1992]

Hello Ladykane,

Have you heard about LDN ( ldnreseachtrust.org ) For many this has been great for pain relief among other things.

[linziej in reply to Simba1992]

I have just started LDN. Two weeks now. Fingers crossed it eases the pain and inflammation. Are you taking it Simba?

[Simba1992 in reply to linziej]

Yes, fingers crossed👍🏻 There is a pain professor at Harvard who has been treating his patients with very good results Yes, I have been taking it for a year in combination with AIP diet and supplements. High supplementation wit vit D and C, potassium, zinc, magnesium, turmeric and progesterone cream as of late. My pain levels hav decreased considerably. Good luck to you, let us know how it goes😊

[linziej in reply to Simba1992]

Can I ask what dosage of supplements you take. I have just taken my 5th biologic treatment. Been on prednisolone for the last year as inflammation levels are too high. I need to look at the AIP diet. Any advice greatly appreciated .

[Simba1992 in reply to linziej]

Do look into the AIP diet, all the information you need is easily found on the net there is also Dr Terry Wahl diet and Clint Paddison diet that both have proved to have good results. You often get a feel for it by leaving out dairy, sugar and gluten from your diet for three weeks and drinking bone broth daily ( you need to make it yourself) often calms the inflammation and the symptoms. Taking colestrum powder daily also helps to calm your gut that longterm use of pred irritates.

Vit.D 5000-10000 iu daily, 2000-3000mg vit C, zinc prescribed on bottle as well as potassium and magnesium and progesterone natural cream. Turmeric golden paste one tsp in warm coconut milk daily. I took LDN 4,5mg daily until a week ago, now I'm taking 3mg. With LDN less is often better. You need to find your sweet spot😊 Hope this helps.

[Whatsnext]

I am just getting over a really bad flare, I might offer something. Things that are not opioids are: gabapentin sp?, this helps with nerve pain; Naproxen, pain reliever, medrol pack , to get the flare under control, amtripo..., sleeping medicine that I do not know how to spell; and cymbalta, just subscribed yesterday, so I am studying it.

Blessings, Cindy

[Hidden]

Hi LadyKane - I am so sorry for what you are dealing with. How hard it has been for your whole family. There are two things I can recommend, but you need to vet them against your medication.

First - Herbal analgesics. My husband has a reaction to almost all pain relievers, including Ibuprofen, Tylenol and Aspirin, as well as Tramadol. I made up a formula for herbal Analgesics that he takes when he needs. They work pretty well for both of us. This is my own formula, so feel free to share with others if they work for you:

Number of Parts & Ingredient

2 Chamomile

2 Catnip

2 Dill

2 Mullein

2 Skunk Cabbage

2 Wood Betony

Note: a "part" is what you want it to be - so 2 ounces, 4 ounces, etc. I would start with 1/2 ounce, and as always, it is by weight, not volume. Once blended small, you can put this into capsules (take 5 - 6 at a time - that is a teaspoon of herbs or just a little over of material so not so much), and you can take them as often as you need - every 3 hours, 6 hours or whatever

2) Essential Oil Salves: Again, vet your EOs against your medications. For this, melt 1/4 cup of EV coconut oil, then add in Peppermint EO

Lavender EO

Rosemary EO

Thyme EO

and any others that you desire. Let this cool and rub into the sore joint, skin or muscle.

I hope this helps. Best luck

[Fifibelle]

So sorry to hear about your years of bad health.I to have had serious health issues and have had gall bladder and part of pancreas removed.I have no been told I have ra and like yourself experienced severe pain in hand and other joints.but there is light at the end of the tunnel.hospital recommend ed met hot Rex ate injections.absolutely wonderful.mild side effects but I now have my life back.I would strongly recommend.good luck.