Newly diagnosed but not sure I have the right diagnosis - Please help

General
1

Hi all,

My name is Chelle and I am 36 years old who has been experiencing pain for the last 12 months. Apologies if this is long but this is my story:

I have never exercised before and my partner encouraged me to take up HIIT training at the beginning of last year and to complete a Tough Mudder race in August which I did. Once I completed this, this is when my symptoms started. I had pain in my back and sternum and aches down my left side (wrist, knee and shin, calf). GP assumed pulled chest muscle. In addition I had dizziness and blocked left sinus it felt like. This went on for 2 months. Eventually they said acid reflux and pains were anxiety related. I stopped exercising and in Nov the pain went away.

In Jan I started exercising again, all was good until Feb and the same pains started again. I also now had stomach problems similar to IBS C. GP gave me acid drugs but I didn't agree with them. They at this point found a gallstone. I have seen a gallstone specialist and had 3 ultrasounds and they cannot see any inflammation so do not think my chest and back pain is this. I have seen a gastro specialist and they dont think that my stomach is anything to worry about but are doing a colonoscopy to be on the safe side.

For the past few months my symptoms have progressed to the following:

Pain in left side of back down my spine - feels really hot

Pain in left wrist and hand like it aches

Pain still in chest and back (like chostocondritis)

Pain in left buttocks and low back - feels really hot

Pain in left knee - feels really hot

Pain in left shoulder - feels tight and hot

Clicky and loud joints a lot more

Snapping hip in left hip and pain in left hip bone/joint - feels hot

Pain in left eye like its dry and pain in left temple

Intermittent ringing in left ear

These pains come and go - sometimes they are constant and sometimes just in a few places?

I started having phsio but this seemed to make the pain in my back (as this is where he focussed his efforts on manipulating my spine and pushing and pulling my spine bones) a lot worse. This was before the Rheumy diagnosed me.

I forced my GP to send me to a rheumotologist who looked at all my symptoms and diagnosed me with psoriatic athritis as I have suffered with scalp psoriasis since my teens and it has been very bad since last year. He didn't examine me and just put a steroid injection in my bum (sorry if TMI) and said that all my pain should dissapear. it hasn't :(

I am so tired, miserable and down where I feel like some days all I want to do is cry. Do I have this disease? I'm worried I've been misdiagnosed as my pain is still there. I don't take pain killers as I'm scared to as I don't know what's wrong with me. My GP doesn't listen to me and just asks what do I want them to do as all my blood tests and other tests come back fine. I think they think I'm making it up. I have never been ill before and I'm so afraid all the time and now just live in fear of what this is.

Can anyone please offer any advice, I'm due to get married next year to the most amazing man, I'm supposed to be planing my wedding and being an excited bride to be, I can't go on like this anymore.

Thankyou xx

2

First, get a grip. Then find new doctors. Next, engage in your pain. You tell your doctors what you need. Most of our doctors are overworked. Get them to focus on you! Soak in a hot tub. Watch comedy. Listen to music. Plan your wedding. Try swimming for exercise. These are little things to help you cope with pain. Good luck on your journey!

3

I'm mystified as to why you're not on any medication following a diagnosis of PsA. A steroid injection is normally given (especially in the UK) to tide you over while you're waiting for the drugs to work. So where are they? I'm not having a pop at you, it's your rheumy I'm worried about. There might be method in his madness, obviously you can't give us chapter and verse in one post .... but right now I don't get it.

They say you have the disease ... so why isn't it being treated? No wonder you're not happy.

I know it's early days, but many of us have had to seek a second opinion i.e. another rheumatologist. There are also a couple of centres of excellence for the treatment of PsA in the UK which could be the way to go if things don't improve soon in terms of your care.

4

Thank you both for your replies.

Firstly new doctors is not an option, I've tried but I only have one Dr in my area and anything outside of my catchment area wont accept me, I've even tried pleading with other surgeries! I have lost my temper, reasoned with and taken notes into my Dr's appointments. They just aren't that bothered. I go to work every day, try to do cardio every other day even though it hurts, see friends and spend time with my partner and try to pain the pain to the back of my mind. Mostly I just find the pain and worry exhausting.

The Rhuemy gave me a steroid injection 3.5 weeks ago and there is no change in my symptoms. He has 35 years experience and said he was 95% certain I had PsA and the injection would make my pains go away and didn't prescribe anything else. He was adamant that I wouldn't need to see him again for a couple of months as he said the injection would work. I kept asking so what happens if it doesn't. He just kept saying he was so confident it would.

I will be back at the doctors in 2 weeks and then I will have to wait to see the rheumy again.

I was posting here to understand if the symptoms I have are consistent with PsA? I don't have nail pitting or sausage fingers or Achilles heel problems or anything like that? Hence why I didn't know if this was a correct diagnosis.

5



Tired of pain said:

First, get a grip. Then find new doctors. Next, engage in your pain. You tell your doctors what you need. Most of our doctors are overworked. Get them to focus on you! Soak in a hot tub. Watch comedy. Listen to music. Plan your wedding. Try swimming for exercise. These are little things to help you cope with pain. Good luck on your journey!
6



Sybil said:

I'm mystified as to why you're not on any medication following a diagnosis of PsA. A steroid injection is normally given (especially in the UK) to tide you over while you're waiting for the drugs to work. So where are they? I'm not having a pop at you, it's your rheumy I'm worried about. There might be method in his madness, obviously you can't give us chapter and verse in one post .... but right now I don't get it.

They say you have the disease ... so why isn't it being treated? No wonder you're not happy.

I know it's early days, but many of us have had to seek a second opinion i.e. another rheumatologist. There are also a couple of centres of excellence for the treatment of PsA in the UK which could be the way to go if things don't improve soon in terms of your care.

7

That’s quite a story, and don’t apologize for its being long! Very few of us have gone to a doctor with symptoms, and had the doctor go “That’s it! It’s PsA!” My own journey to diagnosis spanned almost two decades. Yes, decades. I’m with Sybil on the “why aren’t you being treated?” question. If what you have is PsA (and it sounds like it to me) we know that patients get the best outcome when they are treated early and aggressively. A steroid shot is not treatment, it is a plaster.
I’m Canadian, and switching doctors here is as difficult as it is for you in the UK. But you have two advantages: you can opt for a private consult, and you live in Leeds. If I were you (and I’m not, so …) I would consider diverting some of the wedding budget for a consult with Dr. Laura Coates, who does PsA research with Dr. Phillip Helliwell at Leeds U.
Having a second opinion in the bag early in the process will likely speed up your treatment process and get you on the road to feeling better sooner than you might otherwise. One of the frustrating and difficult things about this disease is the length of time there can be between diagnosis and finding treatment that works. We call it “The Gap”, and it can take months or even years. There’s an article about it in The Newbies’ Guide.
Good luck with this, Chelle! We’re here to help you through this difficult period, and beyond.

8

Thankyou so much Seenie, This really has made me feel better and to know that someone thinks the symptoms is most probably PsA is actually really relieving in itself. Most days with the symptoms I feel like I'g going mad lol! I am as we speak writing an email to your recommendation and I will pay whatever it takes! Ironically the Rheumy that just gave me the shot was a private doctor and it cost me £180 for the diagnosis and £395 for the steroid shot!

I cant thank you enough and I'll let you know how I get on xx



Seenie said:

That's quite a story, and don't apologize for its being long! Very few of us have gone to a doctor with symptoms, and had the doctor go "That's it! It's PsA!" My own journey to diagnosis spanned almost two decades. Yes, decades. I'm with Sybil on the "why aren't you being treated?" question. If what you have is PsA (and it sounds like it to me) we know that patients get the best outcome when they are treated early and aggressively. A steroid shot is not treatment, it is a plaster.
I'm Canadian, and switching doctors here is as difficult as it is for you in the UK. But you have two advantages: you can opt for a private consult, and you live in Leeds. If I were you (and I'm not, so ...) I would consider diverting some of the wedding budget for a consult with Dr. Laura Coates, who does PsA research with Dr. Phillip Helliwell at Leeds U.
Having a second opinion in the bag early in the process will likely speed up your treatment process and get you on the road to feeling better sooner than you might otherwise. One of the frustrating and difficult things about this disease is the length of time there can be between diagnosis and finding treatment that works. We call it "The Gap", and it can take months or even years. There's an article about it in The Newbies' Guide.
Good luck with this, Chelle! We're here to help you through this difficult period, and beyond.
9

Sorry to come back with another question Chelle, 'cos I know what you want more than anything right now is answers. But you do seem to have been treated shabbily and I'm trying to understand a little more. You mentioned in your post that you got your GP to send you to a rheumatologist, but in your reply to Seenie you say you saw a rheumy privately. I'd have thought your GP would refer you to an NHS rheumy.

I can see the logic in going for a private consultation With Dr Coates. But in the meantime you can also get referred to an NHS rheumatologist so that ongoing (and rather cheaper!) care is in the offing. I mean, you do actually have a PsA diagnosis ... and PsA most definitely requires ongoing care. Does Dr Coates do NHS work? It looks to me as if she does. If you check out the article 'How to be a pushy patient' in 'A Newbies Guide to PsA' you'll see that you have the right to be referred to a consultant of your choice. I can't see any obvious reason why you shouldn't line up an NHS appointment with her and yet see her privately ASAP. I've done something similar in the past.

Incidentally, many of us have not had those 'classic' PsA symptoms. PsA bit me hard but it has never made my fingers or toes look like sausages. And apparently I did have psoriatic nails at one time, but I thought they looked okay. Heels ..... ditto. I started having heel pain but not until about a year after diagnosis.

10

Hi Sybil,

More questions are fine, its actually really nice to talk to people who want to listen and understand! I pushed my GP for a referral to a rheumy and they would have referred me to an NHS one however they pre warned me it was roughly about a 3 month waiting time and they wouldn't recommend me as an urgent case to be seen sooner. That's when I said I would use my savings and pay privately just to get some answers and you still need a GP referral to get a private appointment.

My GP is really bad, they see so many people and have even said to me the majority of people they see are alcohol dependent or drug addicts or smokers. As I'm young(ish), exercise regularly and nothing has come back on tests they're not that interested. They have had to google, fibromylagia trigger points and what blood tests to do for pancreas in front of me! They put me in touch with the rheumy as a recommendation. The NHS is amazing but I just think they're overworked.

Its a relief to know that not everyone has the classic symptoms too. When I google things (which is horrible as my symptoms pretty much cover cancer, brain tumour, MS, you name it!) to try and figure out what I have because it came back with the classic symptoms I just assumed it couldn't be this.

This is the best I've felt in ages as I just feel I'm getting some answers from you guys and that there's a bit of hope and I'm not doomed to be in pain foerver LOL xx

Sybil said:

Sorry to come back with another question Chelle, 'cos I know what you want more than anything right now is answers. But you do seem to have been treated shabbily and I'm trying to understand a little more. You mentioned in your post that you got your GP to send you to a rheumatologist, but in your reply to Seenie you say you saw a rheumy privately. I'd have thought your GP would refer you to an NHS rheumy.

I can see the logic in going for a private consultation With Dr Coates. But in the meantime you can also get referred to an NHS rheumatologist so that ongoing (and rather cheaper!) care is in the offing. Does Dr Coates do NHS work? It looks to me as if she does. If you check out the article 'How to be a pushy patient' in 'A Newbies Guide to PsA' you'll see that you have the right to be referred to a consultant of your choice. I can't see any obvious reason why you shouldn't line up an NHS appointment with her and yet see her privately ASAP. I've done something similar in the past.

Incidentally, many of us have not had those 'classic' PsA symptoms. PsA bit me hard but it has never made my fingers or toes look like sausages. And apparently I did have psoriatic nails at one time, but I thought they looked okay. Heels ..... ditto. I started having heel pain but not until about a year after diagnosis.

11

I sometimes think this site is the antidote to google!

I have been getting a great service from the NHS lately - blown away by the skill and commitment of just about every doctor or nurse I've seen in various specialisms. Some of these people who work for the NHS are incredible. However .... I'm trying not to get too loyal .... the NHS is patchy and when it's bad, it's bad. That's why we have to be our own advocates.

A 3 month wait is about average, possibly a good average. That's why I think it might be a good idea to set that up while arranging a private appointment as well.

It's great to hear that you're feeling more optimistic. Hopefully things will look up from here on but there will likely still be bumps in the road ... we're here to help though.

12

Thanks Sybil, I’m reading up on everything I can get my hands on within this site! I like to really understand it all, it helps. The support on here is so good, especially for a very scared newbie like me :slight_smile: xx



Sybil said:

I sometimes think this site is the antidote to google!

I have been getting a great service from the NHS lately - blown away by the skill and commitment of just about every doctor or nurse I've seen in various specialisms. Some of these people who work for the NHS are incredible. However .... I'm trying not to get too loyal .... the NHS is patchy and when it's bad, it's bad. That's why we have to be our own advocates.

A 3 month wait is about average, possibly a good average. That's why I think it might be a good idea to set that up while arranging a private appointment as well.

It's great to hear that you're feeling more optimistic. Hopefully things will look up from here on but there will likely still be bumps in the road ... we're here to help though.

13

Hi there Chelle, I've been catching up with your story, but first I must extend a warm welcome to LWPsA from another Brit :)

Ok, I say "ditto" to everything Seenie and Sybil have said so I'm going to tell you that my journey started out in the same place as yours -- a private referral to a rheumy who diagnosed me using the same 'hands off' approach and started my treatment with the same intra-muscular Depo-medrone shot in my bum. So I felt like a 'rat on crack' for two days afterwards but it didn't help my pains. Thankfully, though, he wanted to see me back after just a couple of weeks (as best I recall) and then got me started straight away on methotrexate .... I had the first couple of prescriptions (which were cheap as chips) as 'private scripts' but once he'd written to my GP the GP assumed responsibility for the scripts on the NHS. However you cut it there comes a point where your meds have to come to you on the NHS

So a couple of things leap out at me. Firstly, if you want to see this rheumy sooner than he wants to see you -- not unreasonable as you've not had any benefit from the shot -- then ring the clinic and make an appointment. I'd bet that unless he's on holiday you'll be seen within two weeks! You're paying so you're calling the shots.

Secondly, exercise. It is sooooo important to keep moving (I wish I'd known that sooner) but not forcing it so much that all you do is encourage inflammation to take up residence somewhere new isn't helpful. My best advice is gentle stretching. Yoga/pilates is great with an excellent and knowledgeable tutor who can work you within a safe range .... lots of physio practices now include clinical pilates in their portfolio. But truly great is hydrotherapy, you can work much more comfortably with the compression and support of warm water. Again check out physio practices, mine hires a private school pool on Friday afternoons.

Thirdly (so sorry, more than a couple of things!) I cannot understate the difference between being seen by a general rheumatologist and a PsA specialist in the UK. So check out Coates/Helliwell and exercise your 'right to choose' under the NHS constitution and then tell (yes, tell) your GP you want a referral to their centre of excellence. Under the NHS it will take as long as it takes (or you can investigate whether either/both of them have private clinics to get you going) and while you're waiting you can go along with what the other chap comes up with. There is a clearly defined treatment pathway for PsA and the important thing for you right now seems to be getting on it.

And definitely don't sweat not having all the classic symptoms. Me neither. Even if it turned out you had a different type of inflammatory arthritis (but I'd bet good money that you haven't!) the treatments and the pathway in the UK are the same, especially in the early stages.

I am so glad you found us. I wish I'd discovered all these great people and friends as early in my journey as you have.

14


Hi Jules,

Haha its good to hear from Brits :)

I've never been so disheartened when he put that injection in telling me all my pain would dissapear and it didn't and I thought he'd misdiagnosed me. I was devasted.

The exercise thing is the thing that kills me. Because I'm used to training hard, lifting weights and doing high intensity high impact training, I still think I can do that. I stop training and then feel a little better then go back to training, push myself too hard and the pains all start up again. I tried pilates in a reformer class but the stretching seemed to make me worse and it pulled my pelvis and groin (I have snapping hips, which I mentioned to the rheumy who dismissed them, they make the worse sound when I flex my leg, like tendon pulling over bone!) I will look into the hydrotherapy though.

I will go back to the GP and ask for another referral to that specialist to get things moving and as you have suggested get back in touch with the rheumy to see if I can start some sort of treatment now too to get some ease.

Thanks for all the advice, you've all no idea how helpful this has been.

Random symptom this eve is burning in my armpit and eye soreness. The story continues haha....


Jules G said:

Hi there Chelle, I've been catching up with your story, but first I must extend a warm welcome to LWPsA from another Brit :)

Ok, I say "ditto" to everything Seenie and Sybil have said so I'm going to tell you that my journey started out in the same place as yours -- a private referral to a rheumy who diagnosed me using the same 'hands off' approach and started my treatment with the same intra-muscular Depo-medrone shot in my bum. So I felt like a 'rat on crack' for two days afterwards but it didn't help my pains. Thankfully, though, he wanted to see me back after just a couple of weeks (as best I recall) and then got me started straight away on methotrexate .... I had the first couple of prescriptions (which were cheap as chips) as 'private scripts' but once he'd written to my GP the GP assumed responsibility for the scripts on the NHS. However you cut it there comes a point where your meds have to come to you on the NHS

So a couple of things leap out at me. Firstly, if you want to see this rheumy sooner than he wants to see you -- not unreasonable as you've not had any benefit from the shot -- then ring the clinic and make an appointment. I'd bet that unless he's on holiday you'll be seen within two weeks! You're paying so you're calling the shots.

Secondly, exercise. It is sooooo important to keep moving (I wish I'd known that sooner) but not forcing it so much that all you do is encourage inflammation to take up residence somewhere new isn't helpful. My best advice is gentle stretching. Yoga/pilates is great with an excellent and knowledgeable tutor who can work you within a safe range .... lots of physio practices now include clinical pilates in their portfolio. But truly great is hydrotherapy, you can work much more comfortably with the compression and support of warm water. Again check out physio practices, mine hires a private school pool on Friday afternoons.

Thirdly (so sorry, more than a couple of things!) I cannot understate the difference between being seen by a general rheumatologist and a PsA specialist in the UK. So check out Coates/Helliwell and exercise your 'right to choose' under the NHS constitution and then tell (yes, tell) your GP you want a referral to their centre of excellence. Under the NHS it will take as long as it takes (or you can investigate whether either/both of them have private clinics to get you going) and while you're waiting you can go along with what the other chap comes up with. There is a clearly defined treatment pathway for PsA and the important thing for you right now seems to be getting on it.

And definitely don't sweat not having all the classic symptoms. Me neither. Even if it turned out you had a different type of inflammatory arthritis (but I'd bet good money that you haven't!) the treatments and the pathway in the UK are the same, especially in the early stages.

I am so glad you found us. I wish I'd discovered all these great people and friends as early in my journey as you have.

15

I just wanted to pop in and say that I was asked yesterday what the "classic symptoms" of PsA are, and my reply was, "well, that depends on the person!"

I didn't get diagnosed with PsA until I was 36. We think I've had it since I was 4. The symptom that got me in to see a rheumy was incredibly swollen ankles. My rheumy took a lot of time with me going over my medical history (nearly 2 hours!) and believed me when I told him all the symptoms I'd experienced over the years (first doc to take me seriously and not tell me it was growing pains, due to my weight, etc.). I didn't get much relief at all from steroids or anti-inflammatory drugs at the time. It wasn't until I got on a biologic that I really felt significant relief.

16

Hi Chelle! PsA is tricky because it does seem to attack in so many different ways. With all the burning pain you have, that sounds like inflammation and swelling is pressing on nerves. The swelling can be so subtle you might think you don't even have swelling. My fingers weren't exactly sausages, but my rheumy could see and feel the PsA in them--and they did hurt like H E double hockey sticks!!! My feet, too, were swollen. I didn't even realize this until after I went on Enbrel and the swelling went down! My legs even look skinnier since I've been on Enbrel (and I didn't lose any weight!). Most of us have pain in many places, and pain that seems to come and go, or "travel".

As far as blood tests--mine are always normal, except one they don't typically test for PsA. Your rheumy should know that about 50% of PsA sufferers have negative blood tests for inflammation.

I picked up on you don't like to take pain pills. Well, I'm guilty of not taking a lot of pills, and when my rheumy suggested prescription meds such as methotrexate and Sulfasalazine, I said no. I kept hoping somehow the pain would go away. I tried all of the natural remedies. Lots of people have been talking about turmeric (curcumin) in pill form lately-there are discussions about that (you've probably read them already). I did a lot of p.t. for my back and neck. Just keeping in motion seems to help with some of the pain and stiffness, but it's ever-present despite that. And, I don't think you mentioned fatigue (maybe I missed that) but the fatigue--it's hard to keep in motion when you always feel exhausted. :-( I'll be 62 in a few weeks, so I'm no spring chicken--I think the older you get, the more the pain and fatigue take over.

Anyway, my PsA pain (and my psoriasis) nearly completely disappeared when I started Enbrel last summer! I had PsA so many years that my doctors were able to get me on it, bypassing using some other meds I was afraid of. And Enbrel scared me, too, but the people on this site convinced me if I didn't do something to stop the PsA, the PsA would "stop me"!

So, keep up the exercise as much as you can tolerate. Some OTC pain meds sparingly should be safe and can help a little, ice packs alone or alternated with heat, or heat alone can be extremely helpful. Ice packs had helped neuropathy, temporarily, (burning, hot coals and walking on hot nails feeling) in my feet. Right now I'm sitting against my heating pad for my lower back. Physical therapists will tell you not to use heat--heat helped my back A LOT, when they said only use ice!!!! But ice helped the pain in my butt and SI joint region.

I'm glad for you that you found this website--it's so nice to be able to discuss your symptoms and get advice from people who really understand what you're going through. Good luck!

17

Thankyou for this, it still surprises me that people take so long to get diagnosed with this. To have to live so long in pain is so sad but at least they found it and hopefully you are now feeling well :) The classic symptoms is the thing that has swayed me so much and the fact my pain moves around. Like today, no knee pain, no leg pain or low back pain like a few days ago, just burning in ribs and sternum/chest and across my shoulders up into the back of my neck and head! Every day when something new comes up I think what's this new hell today LOL! My scalp is playing up like mad today too. I dont know much about the different types of meds yet but I'm researching using this site and others :) xx

nym said:

I just wanted to pop in and say that I was asked yesterday what the "classic symptoms" of PsA are, and my reply was, "well, that depends on the person!"

I didn't get diagnosed with PsA until I was 36. We think I've had it since I was 4. The symptom that got me in to see a rheumy was incredibly swollen ankles. My rheumy took a lot of time with me going over my medical history (nearly 2 hours!) and believed me when I told him all the symptoms I'd experienced over the years (first doc to take me seriously and not tell me it was growing pains, due to my weight, etc.). I didn't get much relief at all from steroids or anti-inflammatory drugs at the time. It wasn't until I got on a biologic that I really felt significant relief.

18

Hi there,

Thank you for the kind words and support it's much appreciated :) I was just saying to another member its the different symptoms that sway me like today having burning across my chest shoulders and sternum going into my neck! Earlier in the week it was my knee, thigh and hip! This is a very strange disease!

I absolutely do get fatigue where I could sleep for days I think, I just try to put it to the back of my mind and keep as active as I can (sometimes too active I know which then causes what I think is a 'flare up'). I'm trying at the minute to take each day as it comes and I know dome are better than others. On the pain front I'm gonna try just normal NSAID's from OTC to see if they help a bit in a higher dosage until I can see a rheumy again. I hate the thought of pills as my dad is so reliant on them but I also know from reading this site that taking meds is a must for this disease so I will listen and learn from you guys.

I'm having epsom salt baths every day to have a bit of heat therapy too and doing some of my own myofascial release to try and ease the pain a bit.

This website is awesome :) xx


Grandma J said:

Hi Chelle! PsA is tricky because it does seem to attack in so many different ways. With all the burning pain you have, that sounds like inflammation and swelling is pressing on nerves. The swelling can be so subtle you might think you don't even have swelling. My fingers weren't exactly sausages, but my rheumy could see and feel the PsA in them--and they did hurt like H E double hockey sticks!!! My feet, too, were swollen. I didn't even realize this until after I went on Enbrel and the swelling went down! My legs even look skinnier since I've been on Enbrel (and I didn't lose any weight!). Most of us have pain in many places, and pain that seems to come and go, or "travel".

As far as blood tests--mine are always normal, except one they don't typically test for PsA. Your rheumy should know that about 50% of PsA sufferers have negative blood tests for inflammation.

I picked up on you don't like to take pain pills. Well, I'm guilty of not taking a lot of pills, and when my rheumy suggested prescription meds such as methotrexate and Sulfasalazine, I said no. I kept hoping somehow the pain would go away. I tried all of the natural remedies. Lots of people have been talking about turmeric (curcumin) in pill form lately-there are discussions about that (you've probably read them already). I did a lot of p.t. for my back and neck. Just keeping in motion seems to help with some of the pain and stiffness, but it's ever-present despite that. And, I don't think you mentioned fatigue (maybe I missed that) but the fatigue--it's hard to keep in motion when you always feel exhausted. :-( I'll be 62 in a few weeks, so I'm no spring chicken--I think the older you get, the more the pain and fatigue take over.

Anyway, my PsA pain (and my psoriasis) nearly completely disappeared when I started Enbrel last summer! I had PsA so many years that my doctors were able to get me on it, bypassing using some other meds I was afraid of. And Enbrel scared me, too, but the people on this site convinced me if I didn't do something to stop the PsA, the PsA would "stop me"!

So, keep up the exercise as much as you can tolerate. Some OTC pain meds sparingly should be safe and can help a little, ice packs alone or alternated with heat, or heat alone can be extremely helpful. Ice packs had helped neuropathy, temporarily, (burning, hot coals and walking on hot nails feeling) in my feet. Right now I'm sitting against my heating pad for my lower back. Physical therapists will tell you not to use heat--heat helped my back A LOT, when they said only use ice!!!! But ice helped the pain in my butt and SI joint region.

I'm glad for you that you found this website--it's so nice to be able to discuss your symptoms and get advice from people who really understand what you're going through. Good luck!

19

It sounds to me as if you are doing all the right things to keep yourself going under the circumstances. A lot of rheumatologists won’t give pain meds: the logic is that if your disease is under control, OTC pain relief will be enough. Anything stronger should be for short-term use only. In fact, one of our mods here, is of the opinion that drugs like tramadol, used over the long term, can make your pain worse.
Finding the balance between activity and rest is tricky, and for most of us, it’s a moving target! As you say, this is a strange disease. And as you are finding out, we are strange people. LOL, kidding!
Have a good weekend!

20

I have had huge issues with rib and chest pain for over a year. I can say that indomethacin (indoncin) which is a NCAID has helped tremendously. My understanding is it is not addictive and can not be taken with other ones like ibuprofen etc. Might be one to ask your rheumy about mine prescribed it for me. Been a lifesaver for this specific pain.