Hi all sorry if your fed up reading people's symptoms etc.... I'm feeling a little lost and looking I suppose to find out more of other peoples journeys and thoughts. I have psoriasis but for a while have niggles in my fingers and thumbs. Not bothered me really and a lump on my finger(knuckle). But around Feb my neck was extremely painful to the point I couldn't turn my head or drive. This pain hasn't gone away and causes me headaches everyday. But things started becoming sore at night, my back then my hips to the point I bought a new matress. It didn't help and I was crying at night with the pain. Some after my elbows became sore and I couldn't hoover or prepare lunches so I called the gp.
He sent me for bloods. Came back normal except rheumatoid factor which was positive. I have had an x ray of my hands and awaiting the results from that. But I have nausea, exhaustion, headaches sweats and I can't do the things I used to. I am now having to rest in the afternoon as I think these feelings are fatigue. The other day I could barely walk it's such a shock to my system. Then a few days later it's not so bad. I feel like a fraud.
I'm obviously not been diagnosed but my gp seems to think it's R.A or psoriasis arthritis but do guys feel like this? I just feel like I'm in limbo and sad of always being in pain. Sorry for the rant .... thanks
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Valla81
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So sorry you feel so poorly and please don’t think you’re in any way a fraud! If you’ve got a positive rheumatoid factor you’ve almost certainly got rheumatoid arthritis or a variation and it make you feel absolutely rotten until your symptoms are brought under control.
The fatigue, headaches, sweats and other nasties are all signals your body is trying to cope with an immune system which is attacking itself. If you possibly can, rest and give as many jobs as possible to others. Take pain killers regularly and hopefully you’ll be sent an appointment with a rheumatologist before too long. Keep pushing your GP.
The NRAS helpline is fantastic for helping and talking you through how you feel and they also have loads of info you can find on their website. I’ve had RA for over 30 years and am pretty well controlled but I so remember feeling the same as you did at the beginning - it’s a life-changing diagnosis and takes some getting used to but if caught relatively fast and you get on the right drugs it’s manageable as are all things. Very best of luck and do hope you will be feeling much better and more in control very soon.
Thank you so much for taking the time to reply ... I'm sorry you have had to go through this and all that time too. Yeah I never thought about contacting them .. I might so that. Its just such a change to your whole life and yeah once things are under control probably more manageable. Thank you again so much for your help .
Just a note that a lot of people without Rheumatoid have a positive rheumatoid factor. A lot of people with a negative rheumatoid factor have RA. RA is usually for certain with positive RF AND positive anti-ccp. Still, you can have RA without being positive for either RF or anti-ccps
yes I’m afraid the symptoms are very common with active disease. 6 years ago I was diagnosed with RA. I’m now being retested as I’m having all your symptoms and my rheumatologist thinks it’s psoriatic arthritis. With treatment hopefully things will settle for you . Keep communicating with your medics they can help.
Thank for your advice and taking time to respond but I am sorry your having problems again with a new condition. I hope things settle down soon for you .
Do not apologise. You are amongst friends. First question my rheumy ever asked me was do I have any close relatives with psoriasis? Sadly closely related. You are NOT imagining things nor a Fraud. Invisible illnesses suck, you will get it under control with the right meds. Might take time but please don’t give up or think it’s your fault. Phone NRAS. And keep in touch here. Xx
It's an odd one as yes you can be posative and have no symptoms and negative and do. And RA is systemic so no one person has the same symptoms as another. I assume your GP has referred you to a RA clinic? if not ask why and if you can afford it it might be worth going private to see someone for help. I'' be honest Ive never had a lot of the symptoms you describe but that means nothing and a GP can give you a small dose of steroid to help but it then has a down side as it can mask the symptoms but not treat the disease. RA once diagnosed and treated life will get better for the vast majority of people. Sadly not all but you should take on this journey with hope and be patient, it will get better.
Thank you for your advice . My gp said he would refer me once I got the x-rays so hopefully soon . The hardest part I feel at the moment is the waiting around. Thank you again for your help .
Hi there. With a positive rheumatoid factor I would ask if your GP would refer you to the rheumatology clinic before you even get the X-ray results. Your joints might not show any issues but with a positive factor plus your symptoms it sounds like you need rheumatology treatment. I have had Rheumatoid Arthritis for over twenty years and those symptoms are very similar to how I started off. But as other posts have said with the correct treatment/medication you can regain normality again and feel so much better. I look forward to hearing how you get on.
You should really be referred on the basis of your existing symptoms. An X-ray or other scan can only ever be a positive test for RA - it is not a reliable negative test (i.e. if no inflammation shows on the x-ray it doesn't mean there is no inflammation/no RA). Therefore an x-ray is mostly a waste of time because the result is not diagnostic.
That's why you need to see a rheumatologist - he/she should look across the full range of your symptoms and also do a physical examination. If they are any good they won't need an x-ray. In the unlikely event that the rheumatologist isn't able to reach a diagnosis without one, he/she can refer you.
The most important thing to emphasise to your GP is that a delay to diagnoses and the commencement of treatment can result in permanent damage in inflammatory arthritis.
According to NICE guidelines, you should be referred to a specialist urgently if you have had symptoms for 3 months or more.
Also according to NICE, "Early diagnosis of inflammatory arthritis is an important factor in determining long-term patient outcomes, as symptoms can be greatly reduced or completely remitted with early treatment."
Also according to NICE, "investigations ... should not delay referral for specialist opinion." X-rays are specifically mentioned as an investigation that should not delay referral. i.e. If your GP wants you to have an x-ray, that's fine, but it should happen in parallel and the specialist appointment should not await the result.
Google "Diagnosis and referral of inflammatory arthritis" for the above references.
You have some good advice from others, I just want to restate that you are not fruad, symptoms can change day by day, hour by hour. Stay in touch and let us know how you get on?
totally agree with this point, symptoms can be invisible, minor but agonising, major but tolerable, serious and less so and different hour by hour. You are not a fraud, some days I can manage swimming other days I can’t brush my hair. We’re all different (note my diagnosis of Stills) but all suffer and need help and understanding to cope.
You are most certainly not a fraud. Your experiences sound similar to mine before I was diagnosed.
I was seeing my GP about breathlessness - nothing. Aches and niggles all over - no explanation. I used to be a postie so thought pain in my neck and shoulder were from that. Started getting terrible, intermittent pains in my knee that would have me gasping. I even went to a local A&E with my knee as I thought I'd ruptured something while I was out scrambling through woodland (I'm a dog walker) but they were so rude and dismissive and said 'You weren't limping when you came in' as I started limping when I rose from my chair in the waiting area.
Then my fingers started seizing up so went to the GP again. Had a blood test and referred to rheumatology. At my first visit there they said the results from the blood test were inconclusive but there was rheumatoid factor. So they tested me again. Went back 2 weeks later and the Dr said 'Your blood results are very interesting'. The RA was there and racing at a speed of knots. Think I got there just in time.
Actually, at a later date, I was told by a different rheumatologist that she thought I was at a possible crossover point between rheumatoid and psoriatic arthritis. She left shortly after, though and no one ever mentioned it again. Shame as I liked her and appreciated her being very open and informative.
Anyway, take good care of yourself and hope you get some answers soon. x
Thank you it's a little easier knowing that others understand ( although im sorry everyone has to suffer these medical issues) yeah maybe after my x-rays and more tests things will become clearer. Need to try to get the pain under control though as its tough. Thank you for your help its really appreciated.
Hi Valla, I have psoriatic arthritis and (as with 50-60% of sufferers) ALL my bloods are normal. I was diagnosed about 4 years ago after severe problems with my fingers, but my neck and achilles tendons had been bad, on and off, for several years before that - an MRI of my spine showed mild problems, but not enough to account for my symptoms (which had stopped by the time of the MRI, so is i suspect it was caused by inflammation).A hand x-ray showed damage typical of psoriatic arthritis. My psoriasis started nearly 50 years ago but has spread a little, recently.
I had put my brain fog and tiredness down to age (late 50s at the time). But then my right hand got so bad that I couldn't hold a cup, or cut a slice of bread in half and other joints started to join in.
The good news, though is that the meds really do work for a lot of people. It took about 2 years for me to get to a stable state (but bear in mind that Covid lockdowns occurred about 4 months after I started meds, so getting to see a rheumatologist was impossible). But I have now had 15 months with only minimal problems, and my energy levels are better than they had been for 10 years. Yay!!! I feel like me again!
All inflammatory arthritis can come and go, but psoriatic arthritis is particularly unpredictable and difficult to diagnose, if that is what you have. So I would definitely recommend that you keep a diary of problems, and take photos of any red and/or swollen joints - sod's law is that you won't be in a flare when you see a medical professional!
Try to stay positive as stress will only make things worse. Lots of people have great stories to tell, but they often don't use the forums because they are, understandably, too busy getting on with life. Good luck, and never be afraid to ask questions, or to rant!
Thank you so much for being so open.... that must have been a difficult time especially during COVID-19. Yeah it seems like it's such a long process but as you say once you have the diagnosis and correct treatment it's more manageable. Thank you again .
It’s good you’re here. I got lots of info and support when I first started this journey. My bloods are all negative and diagnosis is palindromic rheumatism. I still don’t know 100%. I’m on hydroxychloroquine and it has helped tremendously. I experience the fatigue along with many of the systemic symptoms you have. I have some osteoarthritis as well. Sometimes I feel my symptoms are more RA like. The meds have pretty my eliminated the PR flares. Mine were intense pain that would pop up for hours to days, disappear and pop up elsewhere. This site left me feeling less alone and I got tons of info from very supportive people no matter what questions I had. One was about psoriatic arthritis as I get itchy rashes sometimes. My derm says it’s not psoriasis. If I remember correctly pitted nails are an indication of that along with rheumatoid symptoms. It seems likely you have RA or PA considering your symptoms and positive RA factor. Make sure you have a doctor you trust, make notes and take pictures. This helps a lot. I’ve had a couple of lumpy swellings I show took pictures of and my doc confirmed they were related to my illness. Take care and keep posting. Good luck!
It's a shock when yout told but once you see a consultant and get your meds sorted you will definitely feel much better. I remember when I was first diagnosed bloody knees came up like footballs agonizing, once on meds it all settled good luck.
hi I have ankylosing spondylitis, which can be similar to psoriatic arthritis. I had severe back pain all my life put down to my career as a nurse. In my mid 40s I went into a permanent flare, with the neck pain severe and so stiff I couldn’t move it. I would wake every night like 3-4 am with severe pain in ribs, pelvis and lumbar spine, as well as night sweats. This night time waking is classic of inflammatory arthritis. My gp put me on amitriptyline whilst we tried to solve it, which did help me sleep and cope better in the day with pain. Like others have said my inflammatory markers are always fine. I had a spine and pelvic mri which showed I had fusion of my pelvis and rib cage, I have no chest expansion, so get out of breath easily. Even if your X-rays are fine I would push for referral to rheumatology. I also get peripheral symptoms including hands, feet, knees and shoulders. I am on a biologic for the spinal symptoms, and methotrexate for my peripheral symptoms. I’m unfortunate in that I lived with this for 25yrs before being diagnosed, I’m fairly certain my dad had it, he had the same issues and died with the typical AS stooped posture.
Here’s a poster showing when you are entitled to ask for a referral to rheumatology. Let us know how you get on.
Welcome to this lovely group! I'm in the same boat, complete shock to find elevated Rf factor in my bloods in December and I've been waiting since then for an appointment to see a rheumatologist and in utter limbo. It's been a real mental health and physical challenge for the last four months as the fatigue had been debilitating. I phoned the NRAS in desperation who were spectacular. The leaflet books they have are wonderful, really allayed my fears and made me fell less of an imposter! I really hope you have more good days than bad x
I can’t really add anything to the good advice given already but hoping you get some relief soon and wishing you all the best. It is a shock but that will lessen over time, take care x
Never be afraid to post. It's good to let it out. Push your GP...or if you afford it get a one off private appointment with a rheumatologist. I suffered for three months in agony unable to walk at time etc thinking I'd partied too much turning 40.
Then the wait time for an NHS rheumatology appointment was 18mths. I paid for a private appointment and was seen much faster by the NHS because I had a diagnosis of RA.
Go back to the GP even for better pain relief and push them to get you seen. Good luck.
Sorry to hear what you are going through. You need a referral to a rheumatologist Your doctor cannot diagnosis you or give you treatment. I would push for appointment ASAP. I understand in some areas there is a long waiting list but perhaps you can get a cancellation if you keep phoning. My GP said there was a possibility I had RA but couldn’t do anything for me, I was later seen by a rheumatologist after a referral.
Sorry! I have just edited my post. I was seen by a rheumatologist. I was diagnosed years ago and although the waiting list wasn’t long I went private. I was self employed( as a cleaner!) and couldn’t take time off so I needed to be seen. You were lucky you got seen so quickly, I know someone waiting in my area and they have been told it can take up to a year!!!
Crikey! A year! I couldn't imagine what that feels like to put up with the pain for a year! My area is normally 6 months but as I said my GP did an urgent referral for which I am truly grateful. Still in pain but nothing as bad as it was. Hoping my meds kick in soon!
Hi, I would say definitely RA but don’t despair, I came on this site asking about RA for my son who was diagnosed last year, the pain he was in was in unbearable to watch and I was at my wits end until he got his diagnosis but he is now on methotrexate and is virtually pain free leading a normal life again, stay strong once you get your diagnosis and start on a treatment plan you will feel much better 😊
Hi, since you have psoriasis, it sounds like you haven psoriatic arthritis as this fits your symptoms much more than RA. The impact on one finger only is total match to the symptoms of psoriatic arthritis. The pain in your spine also suggests axial psoriatic arthritis. Please ask to be referred to a rheumatologist.
You are not a fraud, as with most chronic illnesses it can be that some days are worse than others. The tiredness and fatigue are aspects of it that people seem to link together, but my gp said they are two different things, and I truly believe that. Tiredness is when you can still do things you normally would on some level, whereas fatigue absolutely wipes you out, body and mind. You can't function and have to rest even though you feel or others feel you shouldn't. Another reason why RA is labelled the sleeping sickness. Has your gp spoke about what the next step is? I hope they have and that you get the support you need. Time to start putting yourself first for awhile now. Over time you will learn to cope, understand what your triggers are and you'll learn to do things differently. Most of all you need to realise it's not your fault!
Hi thank you for your reply .. my gp said that once my x-rays were back I would be referred.. but the pain meds I'm on are not helping .. it naproxine and paracetamol so will contact him on Tues I think for something else .. I really do appreciate eveyon taking time to respond x
Ah yes sounds all too familiar, with my early days of RD development, diagnosis, and treatment. My dad was unwell with psoriatic arthritis and complained of awful pain.
So no you're not a fraud, the pain is dreadful, and controlling it is very difficult till proper treatment kicks in.
The thing is RD is a systemic illness so effects the whole body, hence the mix of symptoms throughout your body.
Good thing is your GP sounds on the ball, and the next step is seeing the RD consultant and team for treatment.
Meanwhile discuss with GP pain control, rest, res,t rest, do what is absolutely needed, ask for help.
Waiting for results and for referral to hospital is really difficult when you are in a lot of pain. A positive Rheumatoid factor occurs in lots of other conditions apart from rheumatoid arthritis so with your symptoms you really need to see a rheumatologist. In most areas of the country, including where I live, rheumatology departments have special ‘early arthritis clinics’ where patients with new arthritic symptoms are seen within 2-3 weeks. Your GP may intend to refer you to one of these clinics, once he has the X-ray results.
Hi sorry to hear your suffering! I was just like you after an operation and hysterectomy. Then I was referred to Rheumatologist and was prescribed Hydroxychloriquine. I was negative for RA but had the symptoms. The meds worked for a while supported by Steroid injections which helped immensely. However lots of steroids have side effects as well and only helped with symptoms not RA. I'm now on Sulfasalazine and Methotrexate as well. I struggled with accepting Methotrexate prescription but I can honestly say that I feel much better since taking this. I have good and bad days too but mainly my pain is controlled. Hopefully will be able to reduce some meds soon!
Basically you definitely need a Rheumatologist. Even if a private consultation and then move to NHS. You should not have to wait on X-ray s as that would only show Osteoarthritis. If you have a positive RA serum test then you have RA but if controlled you will feel better. I try to keep active by cycling which makes a big difference. There are positive things if you get treatment . Good luck !
Thank you everyone for all the help and advice .. i was feeling way out my depth and with no one who understands the pain. ( although very caring and sympathetic). I am on naproxine and paracetamol but it's not working so I will try contact my GP on Tues although it will probably be a nightmare with the holiday weekend. Thank you all again and I will keep this feed updated as things move forward. Hope everyone stays healthy x
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