Please help! Is it psoriatic arthritis?!: I would love... - NRAS

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Please help! Is it psoriatic arthritis?!

Minette53 profile image
34 Replies

I would love some advice about whatever I am suffering from especially lately. Everyday I feel lost and scared because I don’t know what’s wrong with me or what I can take for it to help the pain to go away. After experiencing a sudden headache, I was diagnosed with multilevel cervical spondylosis back in 2014. 2016, I started feeling some mild pain on my left side like neck, shoulder and light tingling or numbness in my 2 left small fingers. Then weird sensations on left side of my face and head (which I also get if I carry a bag a little heavy on my left side), my shoulder and also lumbar, weak leg and warm foot.

I was sooo worried about all this thinking it might be stroke or heart attack or something to do with my heart. I have seen the cardiologist in 2018 who said after some tests, everything was fine with my heart. I was really relieved then I battled to get referred to a rheumatologist after many normal X-rays and blood tests, physio, chiropractic and different supplements, only to be discharged from 1st appt saying it’s all coming from my neck. Slowly things got worse, as well as head, face, neck, shoulder, back pain, l started feeling this horrible deep dull pain, always on my left side on my ribs just at the same level as my left breast under my armpit like a pressure which radiates to my chest and causes short breath, so, back to square one with worries about my heart. Last November had an cardiac MRI which was normal, then been referred to neurologist, had MRI on head and neck Which showed degenerative changes at C5/C6 with narrowing of the right side foramen. discharged from neurology as MRI didn’t show anything to do with neurology. Now this pain on my left ribs which is the one that bothering me the most along with headaches, neck, shoulder, sensation on the left side of my face is present everyday all day with pressure on the epigastric area which gives me short breath. I have to always breath deeply in the attempt to get rid of it and open my blocked chest.

I suffered with psoriasis when young then it has disappeared for many years now it’s back but not that bad. No family history of psoriasis

My question is, can arthritis in all it’s types cause dull pain on the ribs with short breath?

Does anyone experience this kind of pain with arthritis?

I am very sorry for the long message and grateful for any help I may get. My Gp doesn’t seem interested.

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helixhelix profile image
helixhelix

Yes you can get inflammation in your rib cage, called costochondritis. It’s common in people with arthritis but also common in people without inflammatory arthritis too.

I have rheumatoid arthritis, but also osteoarthritis which has caused damage to about 6 of my vertebrae and I have foraminal stenosis in cervical and lumbar spine. In my experience everything you describe can be caused by the cervical damage. Including rib pain as a knock on issue.

I have not gone down the route of taking drugs that dull nerve pain as they mess with my head. Instead I have worked with a physio and have a stretching routine that really helps me. She also did a diaphragm release technique, and I now do diaphragm breathing to keep my chest supple. It has really helped with breathlessness.

my.clevelandclinic.org/heal...

It seems that your doctors have been quite thorough, so try not to worry about your heart. Do you do cardiac exercise?

Minette53 profile image
Minette53 in reply tohelixhelix

Hello helixhelix,

Thank you for your reply and input. I feel relaxed, it’s so helpful to know that my unexplained pain is common and can happen with arthritis. I don’t understand why then my Gp looks at me like don’t know what you are talking about and finding it hard to try to understand what’s going on!

I really feel for you, it sounds like you have been through a lot.

I do have stretching routine too as well as meditation.

I love walking but now every time I go for one It triggers the rib pain and the chest stiffness with short breath. So I try to do less.

Take care

Xx

With the usual caveat that I’m not remotely medically qualified...the symptoms you’re describing don’t strike me as typical of psoriatic arthritis, or inflammatory arthritis generally. The primary symptoms of PsA are very similar to all arthritises, i.e. joint swelling and pain, with the main differences being the pattern of joint involvement (RA typically has a symmetrical presentation, ultimately effecting both joints in a pair, whereas PsA can often be asymmetrical) and that many people with PsA have completely normal blood work, including the standard inflammatory markers of crp and esr, even with visibly swollen joints. PsA does tend to have spinal involvement much more commonly than RA, but less so than ankylosing spondylitis, which whilst it can involve other joints, predominantly effects the spine.

I have longstanding PsA with spinal involvement, but also have a congenital neurological condition that was diagnosed after becoming problematic in my early 20s. It led to a reduction in csf flow in my spine due to an obstruction at the cervical level (my brain was herniating through the opening of my skull and obstructing csf flow), one of the many results of which was pain, tingling, pins and needles, and weakness in my arms, hands, legs, and feet. The proper term for this is peripheral neuropathy. I would also get episodes of my legs just collapsing from under me caused by the same thing. By the time I eventually got diagnosed, I needed two walking sticks to move, but could barely hold the sticks because of the problems with my hands and arms. The insult was that they’d had an mri definitively showing the problem since my first neurology appointment, but told me to my face that the problem was ‘all in my head’. The reason for that was that type 1 chiari malformation is relatively common, occurring in around 1 in every 1000 people, but only causes symptoms in perhaps 1 in 5000 people that have it. It’s often found as an incidental finding when someone is scanned for something else. Even when I finally made my way to a neurosurgeon, I was told all they could guarantee was getting rid of the headaches, because my hernia was small and couldn’t possibly be causing all the symptoms I had. Ten years down the line, it’s now known that the size of hernia in chiari is actually irrelevant to the severity of symptoms experienced, and within 3 days of my first op, I was walking unaided for the first time in more than 18 months. It was indeed all in my head, just not the way they’d all meant.

The reason I’m telling you all this is because I got shunted from specialty to specialty, and even when I landed at absolutely the right place, still got told not only that it’s ‘not my problem’, but also that there was nothing physically wrong with me in spite of test results proving otherwise. The inflammation caused by active arthritis can lead to peripheral neuropathy related to specific joints, but from my own experience and reading, diffuse nerve symptoms often indicate a more central problem like the neck or spine as the root cause. I think neurology probably is the right specialty for you in that regard and to get treatment, but in addition to improving your symptoms, the underlying cause of your neck problems needs to be correctly identified in case there is an ongoing condition that requires longer term treatment.

I can’t give you any more specific advice other than you absolutely have to keep pushing and fighting for someone to take you seriously and try and get you sorted out. The reality of modern medicine is that for all people think we’re really advanced, over years of repeated experiences such as the above (including trying to get my arthritis diagnosed, which took an entire decade) what we actually know and properly understand about medicine and the human body is minuscule. We’ve only really scratched the surface in many areas, and doctors are also human, with all the faults and flaws that come with the human condition, including varying degrees of arrogance, shortsightedness, or simply lack of knowledge. Out of curiosity, have you ever had any ultrasounds on any joints? Also, has anyone offered you nerve conduction studies to prove that you have problems with the nerves transmitting signals? It won’t necessarily identify the source, but will act as evidence that there is something going on. In addition to all my other various broken and malfunctioning bits, I have compression of both ulnar nerves (the nerves running from the elbow to the hands) that became symptomatic whilst trying to convince them of my neuro condition, and they did nerve conduction studies to essentially shut me up. I think they thought it would go towards proving the chiari symptoms were all psychosomatic, when it actually revealed I have cubital tunnel syndrome in both arms, which is the elbow equivalent of carpal tunnel and I need an op to sort 🤷‍♂️😂

I hope some of this has been useful to you, and you manage to get somewhere. I know how frustrating and difficult it is when there’s something obviously wrong but no one seems willing to listen or take it seriously, but I am also living proof that polite but immovable persistence can achieve a lot.

Minette53 profile image
Minette53 in reply to

Hello Charlie_G

Thank you for your time and this usuful information. Sorry about your suffering, it looks like you have been through a lot.

I had problems with swellings in my my knees about 10/15 years ago, had a steroid injection which helped a lot. Now no more swelling or pain.

When I saw the rheumatologist 3 years ago I showed him my blood test results which show high inflammation markers but he dismissed that saying it’s normal with age.

This weird pain caused me and still causing me a lot of anxiety to the point when I have it, I am scared to stay at home on my own in case something happens to me.

I am so desperate for some answers.

Gentle hugs

Xx

jacobite33 profile image
jacobite33 in reply to

Good morning Charlie G

Find your article post interesting

Would you mind if I asked you a few questions regarding type 1 Chiari malformation?

The problems I am having with my neck and the symptoms sound dry similar to this and just looking for advice if it’s no trouble?

Thank you take care and stay safe!

in reply tojacobite33

Of course, I’m always happy to help wherever I can. Feel free to drop me a direct message.

jacobite33 profile image
jacobite33 in reply to

Charlie

Would you mind if I could possibly cut and paste your post in to the tinnitus forum?

Could be very relevant to myself and a few others!?

LoneEra profile image
LoneEra

Great replies from helix and Charlie. Just wondering if seeing someone privately might be an option?

If it is, I’d highly recommend Dr Chris Jenner at the London Pain Clinic. He will look over all your medical history, refer you for any second opinion or extra scans needed (not always necessary) and then draw up a pain management plan - which he will send to your GP.

I’m sure there are a few other professionals like him around the country, but he’s pretty much top of his field. He’s also great with complex cases that have been overlooked in the NHS.

Just a thought x

Minette53 profile image
Minette53 in reply toLoneEra

Hello LoneEra,

Thank you for your reply,

I actually did think about seeing someone privately. I don’t live in London, but it’s not a problem going there, only 3 hours away by car. Does This Dr have an NHS practice? It’s definitely worth looking into that.

Thanks for your help

Xx

LoneEra profile image
LoneEra in reply toMinette53

I believe Chris works on the NHS at Imperial. But the waiting lists are super long. It’s worth knowing that you may only need one or two private sessions to get a diagnosis and a plan in place xx

Minette53 profile image
Minette53 in reply toLoneEra

I will try to find out. Thank you for that. It’s much appreciated

Take care.

Minette53 profile image
Minette53 in reply toMinette53

Oh by the way, how much does he charge for a medical consultation?

Bailybiscuit profile image
Bailybiscuit

You do sound a lot like me. I have been diagnosed with Psoriatic arthritis amongst other types and at the moment it is thought I have Inflammatory arthritis. I have x rays and scans done. The latest mri shows inflammation" as you would expect for a person with RA" I don't test positive for that. I do get a tightness around my chest and feel like I am breathless sometimes. The tests on my heart and lungs were ok. I used to see a chiropractor and he used to do a move to open up my chest which did help but only for a few days. I saw an acupuncturist and he did impress me a bit. He was treating me for something else and each visit he didn't ask how I was, he took pulses. I hadn't told him about my chest as dr's just do not understand. Well he took my pulse and asked if I thought my breathing was restricted. I said that I did and he told me he would work on it and put it right. He did, I was much better. It lasted longer than the chiropractors attempt. I don't go to either now, the chiropractor moved abroad and the other man would happily go on seeing me but they charge £50 a time and if you are a bit worse they want to see you every two weeks. When you are ok they want you to go for maintenance. I also had the tingling a lot and still do at times. In my knees it is the fluid pressing on nerves I think. I have arthritis in my neck so suppose in my arms and fingers it is from my neck. It does depend who you see as I never saw the same rheumatologist twice and each one diagnosed something different. I hope you have better luck. You can google the rheumatologists at your hospital and they all specialise in various types of arthritis but unless you go private I don't think you get a choice who you see.

Minette53 profile image
Minette53 in reply toBailybiscuit

Hi Bailybiscuit, ,

Thank you for this interesting info. Honestly it’s so helpful to read about difference experiences as you learn a lot of things you can try. I found the chiropractor useless especially when you think about all the money your are spending and no result. I saw only one rheumatologist who didn’t show much interested, everything was wear and tear related to age. I had once an Acupencture session. I felt better just after but never though it could give some lasting relief. I will definitely go back for more sessions and see.

Xx

Bailybiscuit profile image
Bailybiscuit in reply toMinette53

Mine was very helpful but after about three years I just stopped. I was starting on a biologic and he didn't want me to take it as he said that it would interfere with his treatment. I still get all those things at times but have just learned to live with them. I hope you find one who can help you.

Minette53 profile image
Minette53 in reply toBailybiscuit

Thank you Bailybiscuit.

Is it the rheumatologist who started you on a biologic? Don’t know much about it. Is it of any help?

I had again this evening the horrible uncomfortable feeling on the rib and breastbone with short breath. It doesn’t hurt just uncomfortable and makes me feel strange or off, sometimes nausea and burping. Better now though. It’s really terrifying as it mimics so much symptoms of heart attack.

As you said I guess I need to learn to live with it until I figure out what is it.

Good luck to you and hope all goes well with biologic.

Bailybiscuit profile image
Bailybiscuit

It is a rheumatologist who prescribes biologics but they usually start with methotrexate or something else. I didn't have any improvement with hydroxychloroquine or methotrexate so tried benepali a biologic which also did nothing. Next I was put on Humira with methotrexate and although I often think it isn't working when I have had to come off it for a week or two I realise it is doing something. If you have much burping and your Dr has ruled out stomach acid causing it it could be you swallowing air because you are anxious. I have found I do that.

Minette53 profile image
Minette53 in reply toBailybiscuit

Oh poor you, it looks like you have been through a lot. Hope you will find the right treatment for you. I have been diagnosed with acid reflux 10 years ago and I am on omeprazole daily. But acid reflux doesn’t affect the ribs, does it?

Bailybiscuit profile image
Bailybiscuit

No it doesn't. I just told myself it must be costochondri s seeing as no one has ever been able to find anything wrong. I too was on omeprazole then lansoprasol. I had to stop as being in it for several years a scan of my lungs showed up polyps in my stomach. I had a camera put down but they were harmless but I could no longer go on those drugs. I'm not expecting my treatment to change as they told me it doesn't stop pain, it pain killers are for that. The treatment I am on is to slow the disease down, so we just have to get used to it.

Minette53 profile image
Minette53 in reply toBailybiscuit

Were the polyps caused by the PPIs?

I take omeprazole like every other day to minimise the side effects. I guess if the treatment slows the disease, that’s something. I asked to be referred to a rheumatologist, but, instead, I was given some blood tests to do.

I wish you the very best with the new treatment.

Bailybiscuit profile image
Bailybiscuit

Thank you. Yes I was told that they were caused by those drugs. They are harmless polyps but I was told not to take them again. I had to have a camera put down my stomach which I dreaded, but it actually was ok. They wouldn't have been found if it weren't for the scan of my lungs. They also picked up a cyst in my pancreas. I had to have another scan to show it in more detail, then I should have another scan this autumn to monitor it.

Minette53 profile image
Minette53 in reply toBailybiscuit

It doesn’t stop does it?! One after the other and we wonder why we are stressed. Yesterday after all day of burning in my chest, i should have taken an omeprazole but I didn’t, I couldn’t enjoy my dinner because of the pain in the epigastric area when I swallow. This morning it’s a little better but I can feel the pain still there.

If they have stopped the PPI’s, how are you coping with your acid reflux?

Well best of luck with your scan. I hope all goes well for you

Bailybiscuit profile image
Bailybiscuit

I didn't have any acid reflux. Most people take them if they are on steroids or something like methotrexate to protect their stomachs. Do you really have acid reflux? and are you on steroids or anything that needs to protect your stomach?

Minette53 profile image
Minette53 in reply toBailybiscuit

I do have acid reflux. I have been diagnosed about 10/12 years ago and I have been on different tablets until now. I am on aspirin but no steroids

Bailybiscuit profile image
Bailybiscuit in reply toMinette53

Has an NHS Dr told you to take aspirin, higher than the tiny dose to help prevent strokes? I wouldn't have thought anyone used it much these days. I asked about taking it and my Dr doesn't want me to as it can affect the stomach. I think you should get a second opinion with another GP as they have different opinions too.

Minette53 profile image
Minette53 in reply toBailybiscuit

Yeah it’s the NHS cardiologist back in 2014 who told me to take 75 mg of aspirin daily. To be honest Knowing that I suffer from acid reflux, I don’t take it everyday. I just hate medication and I wish if I don’t have to take any of them. They help with one thing and ruin many others. Yeah your right. I will discuss it again with my GP in my next appointment .

Bailybiscuit profile image
Bailybiscuit

I hope your Dr listens and takes more notice next time.

Minette53 profile image
Minette53 in reply toBailybiscuit

Thank you. I hope too.

jacobite33 profile image
jacobite33

Sal

Read your post and I can totally sympathise with what your experiencing and hope it can get it resolved and back to being yourself with piece of mind and pain!

Have you looked in to a procedure called AtlasProfilax?

It’s not recommended by the Chiropractors I have been to and even snorted at by the NHS Physio and my doctors

I went and had it done and was totally amazed at the outcome! Went for a swim four days later jerked my neck and went back to square one! Lockdown started a few days after and as soon as it’s lifted I am going back!

Baileybiscuit

I had seen three chiropractors within some seven weeks and back at one twice.Must have had around thirteen sessions in total and only had minor relieve.That one two hour session cost less than all the chiropractors put together and the difference it made was phenomenal!

God bless yous folks and stay safe!

Minette53 profile image
Minette53 in reply tojacobite33

Apologies for the delayed reply and thank you for sharing your case and your experience. No I didn’t look in to the procedure AtlasProfilax but I will definitely. It sounds amazing. I am trying to take it easy these days avoiding using too much my phone or iPad as it gives me headaches and neck pain.

I had a bad day yesterday and today with a flare up. I was ok all last week, yesterday I tried to do some Pilates. Since then, I have pain and aches everywhere, neck, shoulder, ribs, lower and upper back with headaches.

I had a phone consultation with my GP after my test results last week. He said all normal and no action. CPR normal butESR a bit high. When I requested a referral, he said there is nothing a Rheumatologist can do. It’s fibromyalgia.

I was so disappointed by his lack of interest in my case and the easy way of deciding of a diagnosis on the phone without even seing me physically.

Did the Chiropractors you have been to, the NHS Physio and your doctors say why they don’t recommend the AtlasProfilax?

Take care

jacobite33 profile image
jacobite33

Morning Sal

Sorry to hear you had a bad day! My heart goes out to you girl,bless you!

Wee thing here Sal.I have all the neck pain and so forth when I’m reading and on the iPad or neck bent over to long.I slouch when I walk and find it very difficult to walk up straight and turn my head as well.Aches and pains pins and needles.Lot more but to much to list and bore you.When I started looking in to cervical problems the penny dropped.Theres a connection with fibromyalgia apparently.Here's a wee cut and paste

Research is showing a connection between difficult to treat symptoms of fibromyalgia and neck and whiplash injuries, meaning a large number of fibromyalgia patients have neck instability and cervical spine injury causing their problem.

There are people with reviews on fibromyalgia and the atlas re-alignment MarieAtlas has lots on her website have a nosy

You answered your own question.Why did they not recommended it.Lack of interest and out with there training and believes.Look at the bad press Psilocybin (magic mushrooms) got in the 50’s-60’s.Now they reckon within 5 years the NHS will be prescribing it along with psychotherapy.Next big game changer apparently in Psychiatry they say that’s been outdated for years.Lab grade Psilocybin $ & £ signs now how there getting the patents in for the process of making it.It’s a natural substance and can’t be patented.Hence the right bad press years ago from pharmaceutical company’s peddling there anti-depressants that don’t work for a lot of people

The cost of six sessions with a chiropractor then follow up visits over the years.There's another way you you can re-align your atlas but it will cost around £1000 to £2000 that’s the figures I was quoted. X rays and imagining scans and a fancy machine (maybe that is the correct way though) Then if you have an alternative therapist and a procedure costing £250 that could possibly relive your symptoms in two hours? Chiropractors never worked really for me.The possible correct way was to expensive and if there was a possibility it wouldn’t be the issue.All I’m saying for me it was the best £250 I spent in my life! Next time I go when I exercise cycle and swim after I will wear a neck brace.Also the exercise the physio gave (which I find difficult to do) will help the way it is supposed to help

Sal I’m laughing here at my reply.It’s the length of an Andrex toilet roll.Sorry!

Take care!

Minette53 profile image
Minette53 in reply tojacobite33

Food afternoon jacobite33,Thanks for the reply. It’s fine. Don’t be sorry, I laughed too at the description you gave to your post.

Chiropractic never worked for me too. I had so much pain on the shoulder after each session but I thought I will be patient and give it time to really see if it works but it didn’t. I agree with you about going for a therapy that works better for you and cheaper too.

I will look at AstraProfilax and mention it to my GP next time I talk to him and let you know.

Best wishes

jacobite33 profile image
jacobite33 in reply toMinette53

Hey Sal hope your feeling a lot better today hen!?

The profilax hit my pain threshold but she eases off to accommodate you

Och I mentioned it to the physio and I got “the Chinese named a firework after you” loook ROCKET! Might be better just taking your own view one it

Stay safe!

Minette53 profile image
Minette53 in reply tojacobite33

Hey jacobite33,Haha, thanks for me letting me know.

Take care

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