Severe pain

[Dmcquate88]

I recently finished a steroid taper which my doctor provided me with because of severe pain. I finished it about a week ago and the pain immediately returned. Both knees swollen like softballs and strangely enough my right calf muscle is extremely sore and inflamed. It’s swollen all the way into my ankle and it’s almost like I’m retaining fluid when I press on it it leaves dents where I pressed with my finger. I’m used to dealing with the chronic pain but it’s beginning to become unbearable going through this same cycle every few weeks and I can’t keep just taking prednisone tapers to feel better for a small amount of time because as I’m sure everyone knows they deteriorate your bones. My doc is extremely stingy with pain killers I’m prescribed 50mg tramadol which do absolutely NOTHING for my pain. I also take weekly methotrexate and Actemra injections which I don’t think is helping as well as it should but am afraid to start the process of a new medication from scratch again. I’ve already been through humira and enbrel as well neither of which worked for me. But this particular post I’m looking for immediate relief for my pain right now. I feel like I’ve run out of options and heating and icing is about all I’ve got left for the least bit of relief. I’m a single father of 4 year old twins and don’t have time to waste laying around in pain all day but am having trouble doing anything other than that. Feel like I can’t function because the pain drains the life out of me. Does anyone have ANY suggestions at all? I’ll try just about anything once especially at this point!

[helixhelix]

If you have a calf that is hot, tight and swollen then please phone 111 or go to see you GP as this can be a sign of DVT (deep vein thrombosis).....Not to worry you but better safe than sorry.

As for the rest, presumably you've tried anti-inflammatorys? If so, it sounds like you have no option but to push your rheumy about a different med and in the short term take fluid off your knees if they are sloshy balloons. Sorry.

[Dmcquate88 in reply to helixhelix]

I’ve tried a lot of different things. It’s been an uphill battle the last 8 years. I discussed switching meds with rheumy last week but decided to increase the dosage of meds I’m on now and see if it works before going through another switch right away. I’m pretty sure I’ve grown immune to over the counter anti inflammatories like Aleve or Tylenol as they don’t give any relief at this point. I’ve had both knees drained several times with little to no success and am scheduled for cortisone injections next week. I’m thinking knee replacements are in the near future as I just had a hip replacement done in January but I just started a new job so cannot afford to go out on leave just yet. I have a lot going on right now...mostly good things but it weighs on my stress level which I don’t think helps with my physical health at all lol. I’m just looking for any little tricks I might not have already tried to gain some immediate pain relief until I can tackle the monster for long term results. I’ve tried everything from ice and heat to epsom salt baths. Having calf checked out today by family doc just to be safe!

[helixhelix in reply to Dmcquate88]

Good that you're seeing doc to be safe....

Some people seem to find one anti-inflammatory works better for them that others. So Aleve (Naproxen in UK) is a good one but maybe ask doc for a different one like arcoxia/etoricoxib? At this stage it sounds like anything's worth trying? (Tylenol is just a painkiller)

Have you tried a tens machine?

[Dmcquate88 in reply to helixhelix]

I haven’t tried a tens machine. I’ve never heard of it so I guess it’s something I should look into

[sciqueen]

Hi

Unmanaged pain is a bitch! Instead of the steroid cycle your in, why not get a depo steroid injection from your rheumy team . You can organise that for this week. A large steroid injection lasts for a few wks, and doesn’t have the same side affects as oral steroid.

You should also be taking anti flams to manage your pain. Ask gp, if he won’t prescribe it, then your rheumy team, for break through management of pain. This is really strong analgesics that will manage your pain for a short while (they tend to be opioids so dependency can be high); lastly you are gonna have to look at your dmards combination, you don’t say what dose of mtx you are taking? Because you haven’t found the right combo that suits you. Just a word of warning, a lot of rheumy do not like you taking biologics with oral steroids, so reduce your reliance on them.

Always remember your rheumy team are the care organisers and your go is the support team, so if your gp won’t give you a drug, go via rheumy team - the consultant over rides the gp.

Note I’m assuming you have ra. Are you sero negative?

Good luck

Joanne

[Whowillgiveastuff]

Have you ever been prescribed Co-proxamol? If the answer is yes there may be hope for you.

Unfortunately all GP's in the UK have been ordered not to prescribe to new patients as the license was withdrawn at the start of 2008. (For No Good Reason)

Because of the higher production costs for the reduced quantity the price rose from £2.70 in 2005 to £49.50 in 2015! (Co-proxamol had been the most effective analgesic in the UK for over 50 years prior to 2005)!

India was the last country to ban Co- proxamol and its production during 2013. It wasn’t a surprise when this resulted in the collapse of their palliative care system and the decision was overturned very quickly! It has been available for import from India since February 2017 for an approximate cost of £5.00! If the drug was imported it would become the most effective, safest, and cheapest analgesic available for the NHS!

Because of the lower prices from India anyone who had Co-proxamol prescribed previously would have a chance of future prescribing.

I hope you find a long term solution quickly!

[Maggsie]

Hi, I had similar problem with leg, got checked for DVT and discovered I had a Bakers Cyst. It happened after steroid injection into knee. The cyst eventually burst which was extremely painful for approx 6 weeks. So, get this checked straight away. If you ring the gp and say you have a suspected dvt they will see you same day usually

[Dmcquate88 in reply to Maggsie]

I had an ultra sound done yesterday they said they didn’t find anything but that also does not explain why my leg is so sore and swollen. And it’s at the point where it’s beginning to turn black and blue in the back of my leg behind the knee. Contacting rheumy today to see what he thinks

[Maggsie]

Good luck, let us know what the Rheumy says

[Dmcquate88]

So doctor said the foot swelling was due to the severe flare up I had and the inflammation cutting off blood vessels. I had an ultrasound to make sure there were no blood clots which was a relief. For some strange reason once I had the hip replacement (and had to be off my Actemra and methotrexate for that brief amount of time) it doesn’t seem to be working as it did prior to the surgery. We are going to try increasing my dosage before starting all over with a new med though. Has anyone heard of Duexus? It was suggested to me from someone and I’ve never heard anything about it. Also I read an article about computerized nerve stimulation that is supposed to be under testing and that it’s showing quite some promising results for relieving RA pain. Wondering if any of you have done any research about it and what your opinions are? Thanks for always replying it’s nice to have an outlet like this where people TRULY understand the struggle it is each day!