Sorry for all this but as I mentioned before I have had psoriasis for years but only with one severe bout and lots of pains of all types especially in feet and legs which included three bouts of inflamation in my heels. They were treated with NSAIDS and one needle. My longest treatment was ammytryptoline (can't remember how to spell it) prescribed from Walton Neurological hospital for unexplained neurological problems in feet ie, Parashesia. No one has ever discovered my severe ankle pains I used to get.
Then recently, for two to three years back and neck problems and an mri scan diagnosed Spondylosis and significant nerve root irritation on L5 on left side. My appologies for repeating it.
Fast forward to now and I feel things have got a lot worse. This year mainly especially as my back used to either kill in my neck, my mid back (facett joint problems) and bottom left would burn and if I sit for too long would seriously stiffen with pain in my left hip area and here and there on my legs and feet.
However the past three weeks I've been taking one a day 500mg of Naproxen and 30/500mg of codene & paracetamol (x2) 3 or 4 times a day. Well my back has definately eased a lot. My neck is aching but that's because I really have to respect my posture now and Im actually sitting at my lap top. My hips are still dodgy when I stand up but overall it's much better since on this medication.
I wish I could say that with my legs, they are hurting day and night now. They keep me awake at night and at the moment my left leg is throbbimg behind me knee. At night my thighs hurt and I think "what;s this all about ?" Then it will be my knees, one or both and then in my lower legs. In the past I had a lot of pain in my lower legs but as my arches had dropped I discovered with help from a podiatrist that good foot wear helped a lot. I've no idea what all these pains are now though but Im proud how well Im dealing with it. Its not the worst pain I've had but all day!!! I'm thinking "Give us a break !"
This is like an essay but until I see my doctor I explain all this to no one else, not even my lovely family.
For anyone who can take the time to read it, my biggest appreciation now :)
I can completely understand your need to get this suffering out of your system. And sometimes once is not enough, not when you're waiting for diagnosis and treatment and doing your best to put up with it all .....
I'm not a doctor, but as has been said before, it does sound very PsA-ish. Do you have any swelling at all? I had very swollen knees which was somewhat disabling, but at least I only had to look at them to see the explanation for most of my leg pain. I had thigh pain at night in the early days, a deep ache in the bone. Obviously I can't say if it felt the same or had the same cause as what you experience, but again, sounds very familiar.
I'm like a broken record ... but have you got an appointment date yet? You need proper treatment. You're going to start thinking that you'll always feel like this ... it's only natural after a while. I have some records of my symptoms before diagnosis ... looks like most bits hurt, quite a few bits were swollen, some important bits did not work and I could barely stay awake. Apart from that, everything was fabulous! I don't recall the treatment working fast ....it always feels sloooowww. But most of those pains I had are a long-distant memory. There's a very good chance you'll have a similar experience in terms of banishing or reducing these horrid symptoms.
9 months? That's a lot longer than the recommended wait for an initial appointment. Easiest thing would be to see a rheumy privately in the first instance. I saw a good rheumy privately in Shrewsbury for £150 over 3 years ago. I guess that would be what .... £180 or so now?
But if that's not possible there's got to be something you can do to reduce that unacceptably long wait. I'm going to have a think ..... and others here may have some ideas.
Nana L said:
I'm always amazed ( a slight egaggeration) that I don't have swelling apart from some redness and small cluster veins on inner left knee. I have loads of really tender areas though that are painful to touch. As of yet I don't have a date for a Rheumy I just know it's 9 months Thanks Sybil.
I don’t know what the leg pains are all about, but I can tell you that I had them too. I’d go to bed, and everything from the waist down hurt like hell. A dull, aching everywhere pain, particularly bad in the arches of my feet. I couldn’t sleep without a maximum dose of tylenol (paracetamol). I didn’t have any really noticeable swelling either, except for my knees (which were diagnosed as “osteoarthritis”), and even that was not dramatic. I used to wonder how my arthritic knees could make my entire lower half ache. I also used to wonder how they could make my whole body stiff if I sat for a long time, and why my shins would hurt when all that was apparently wrong with me was my knees. (Shakes head.)
Today I have noticed tender areas on my inner elbow, as well as my outer hip. So what’s that all about? We ask ourselves that question a lot.
Nine months was the wait I faced between the preliminary diagnosis of inflammatory arthritis and a rheum appointment. Then I met a doc who was alarmed by what he saw on my x-rays and who made some phone calls . I was in within a few days.
Sybil and Jules, do you know of any rapid response rheumatology team in the UK?
9 months seems excessive even here. Don't know about rapid response, could come down to good old fashioned 'pushing' supplemented if at all humanly possible by a private consultation. It's too long, that's the bottom line.
Seenie said:
I don't know what the leg pains are all about, but I can tell you that I had them too. I'd go to bed, and everything from the waist down hurt like hell. A dull, aching everywhere pain, particularly bad in the arches of my feet. I couldn't sleep without a maximum dose of tylenol (paracetamol). I didn't have any really noticeable swelling either, except for my knees (which were diagnosed as "osteoarthritis"), and even that was not dramatic. I used to wonder how my arthritic knees could make my entire lower half ache. I also used to wonder how they could make my whole body stiff if I sat for a long time, and why my shins would hurt when all that was apparently wrong with me was my knees. (Shakes head.) Today I have noticed tender areas on my inner elbow, as well as my outer hip. So what's that all about? We ask ourselves that question a lot. Nine months was the wait I faced between the preliminary diagnosis of inflammatory arthritis and a rheum appointment. Then I met a doc who was alarmed by what he saw on my x-rays and who made some phone calls . I was in within a few days. Sybil and Jules, do you know of any rapid response rheumatology team in the UK?
When it appeared that my wait would be up to nine months, I got a private consultation. In Canada, there is no such thing, so I had to go to the US. I spent $275USD on it, and got a PsA diagnosis and a treatment plan. Of course, I couldn’t do anything with that in Canada, but at least we knew what I had. And then when I did get to see the Canadian rheumatologist, I already had two opinions, consistent with eachother. I started mtx immediately. Not that it did any good, but it was a start.
NanaL, I think an initial private consultation would be well worth your while. If you are going to do that, though, I would consider going to one of the centers of excellence, or to a rheumatologist recommended by someone you trust. Between them, Jules and Sybil are the ones that know.
'You have the legal right to start your non-emergency NHS consultant-led treatment within a maximum of 18 weeks from referral, unless you choose to wait longer or it is clinically appropriate that you wait longer.'
This is something to tell your GP when you point out that you are in pain and need to start treatment ASAP.
I think you might get quite a way in one private consultation. It would be much longer than an NHS one. I had about and hour and a half for mine. I'm not sure how private joins up with NHS, Jules would know. But I think there are lines of communication that allow for continuity.
The private doc I saw also worked at the NHS hospital where the rheumy I was seeing couldn't be bothered to treat me. So that was a bit different.