Hi - I'm New Here!!

ToniT1504

Hello - my name is Toni and I am living with arthritis.

I have suffered with lower back pain following two falls during my teens and twenties. In my early thirties I began to have niggling back pain if I stood, sat, walked or lay in one position for long periods of time. Originally my pain came from my coccyx and the last few vertebra but in the last few years it has begun to affect what feels like the sacroiliac joints and is now so bad that the pain is unbearable after just making a meal, washing up or doing chores such as ironing. If I sit in the car on a short journey of say fifteen minutes, I can not stand upright or walk properly when I get out of the car.

In the last couple of years I have also begun to have random joint pain in hands and wrists, elbows, knees, ankles and feet - especially during the colder months - and I suffer with Sjogren's Syndrome (dry eyes and mouth), mouth ulcers and sensitivity to bright lights and loud noises. I have icy cold hands and feet even when the days begin to warm up and I am exhausted most days by tea time. Also, I have suffered with some form of IBS most of my life and have just had a really bad bout during which I had to stop eating any form of meat and anything that took a lot of digesting.

Some nights I go to bed in such pain that I want to cry but, thankfully, I usually go to sleep as soon as my head hits the pillow. It is very painful trying to turn over in bed but miraculously I either stay in one position all night or turning does not usually wake me.

I now take all kinds of supplements, which help somewhat, and have consulted my GP and explained the excruciating pain in my back and the random daily pain in random joints. She agreed to send me for an xray after I mentioned that I suspected I might have AS but her assessment was that it was just wear and tear and she refuses to refer me to a Rheumatologist.

Has anyone else met with this kind of 'brick wall' treatment? I would be very interested to know what is the way forward as I am desperate for some relief.

Thank you for reading. Regards to everyone. Toni.

[Deleted User]

Hi Toni,

Lovely to meet you, welcome to the forum. Pain is always distressing but somehow back pain seems to affect so many other bits of the body making it much worse.

An x-ray can be a good start to working out the cause of your pain, an examination may be also useful, and of course your GP can help with pain relief, physiotherapy and maybe blood tests.

Here is our booklet regarding Ankolysing spondylitis

https://www.versusarthritis.org/about-arthritis/conditions/ankylosing-spondylitis/

which I hope will be a support for you in deciding your next steps. What has your GP advised you to do? Please keep on talking - there are lots of ways to make your daily life easier if you let us know where you need help most

Take care
Yvonne x

ToniT1504

Hello Yvonne and thank you for your kind reply. I forgot to mention that I am 70 years of age, though up until recently, before my chronic back pain kicked in, I did not feel anywhere close to that age!!

Also, I was diagnosed as having Rheumatoid Arthritis by a Rheumatologist in France two years ago but the GP I currently consult says this is not so having considered my symptoms. She refuses to refer me for a consultation with a specialist and says the recent xray does not indicate AS. Painkillers have been prescribed but they upset my stomach so I use a topical pain killing gel when it gets really bad. I have had blood tests, all normal, and physiotherapy was just a matter of some simple exercises like going up and down steps and sitting and rising from a chair, all of which I do many times a day as I am an active person not a sedentary type.

Both your helpful site and Creaky Joints advise that a referral to a Rheumatologist at the earliest possible time is important so that a correct diagnosis can be made and treatment commenced as soon as possible. I therefore am puzzled as to why she is reluctant to refer me despite my describing my chronic pain, exhaustion and low mood.

I very much appreciate your help and advice. Regards and thank you again. Toni.

stickywicket

Hi Toni and welcome from me too.

I have RA and OA. I've had both for many years and we all know how debilitating these things can be. It must also be highly frustrating if you feel you have one disease but are being treated for another.

It's a very difficult situation. On the one hand a French rheumatologist has diagnosed RA (what DMARDS were prescribed? And why were you not transferred to a UK rheumatologist once back here?) and you do have Sjorgrens, which is another autoimmune disease. On the other hand the x-ray indicates OA (and the differences are usually fairly clear), you have had former trauma to your spine (often a cause of OA setting in) and you write of how bad it is at night but not of morning stiffness which can be the worst part of an autoimmune arthritis. The other things you describe (IBS, mouth ulcers, sensitivity to bright lights and loud noises and icy cold hands) I just don't associate with either my RA or my OA.

You also write "It is very painful trying to turn over in bed but miraculously I either stay in one position all night or turning does not usually wake me.” I certainly can't relate to that. I can't remember when I didn't wake up to turn over and I certainly couldn't stay in one position all night.

So it all seems a bit maybe-yes-maybe-no to me.

One thing I would definitely advise is that you take a list of all the supplements, prescribed meds and over the counter meds or gels that you take to your local pharmacist to check for interactions as some of these symptoms might be caused by that.

One thing you could do is to see another GP in the practice. That would give you a second opinion. Or, some people on here have changed practices to get a GP they were more in tune with. If all else fails people sometimes pay for a private rheumatology consultation in the hope of a definitive answer.

An afterthought. Could you write to your French rheumatologist and ask for your notes?

ToniT1504

Hello Stickywicket - thank you ever so much for your kind and comprehensive reply. As it is late and I am tired I will compose my reply to you and post it tomorrow. To be honest with you, I have so many symptoms that my original post would have been way too long for an intro. I will explain fully tomorrow.

Thank you again. Toni.

dreamdaisy

Hello, it's nice to meet you and I am sorry you have had to find us. When I began my first arthritis back in 1997 my then GP had no knowledge of how an auto-immune arthritis could present and it was five years later that I finally began some medication. It was accurately diagnosed as psoriatic arthritis in 2006, which changed nothing, and then OA was diagnosed in 2011. GPs know a little about a lot and although many are now better informed about the vagaries of auto-immune arthritis there remain pockets of ignorance and in the case of your GP, arrogance, as she has has completely discounted the opinion of a fellow medical professional. That's poor form.

PsA traditionally begins in the smaller joints of the body and causes a different kind of damage to RA. It is also a sero-negative form of arthritis, i.e. rheumatoid factor is not present in the blood. Mine began in my left knee (I like to be different ). That GP also failed to take into account that I was born with eczema and developed asthma aged seven, also auto-immune inflammatory conditions. By 1997 genetic predispositions were understood but I don't think she had kept up with her reading.

I'm having a rough time at the moment so will leave it there for the time being. I look forward to reading more about your situation and I hope I can help with encouragement and support. DD

ToniT1504

Hello again Stickywicket

I will try to reply to your points in the order in your post....

Yes, I do feel frustrated - mainly because I do not know for definite exactly what I am suffering from as I have one opinion from a Rheumatologist and another from a GP. My list of symptoms is so long that it is difficult to relate and discuss them all in a 5 minute appointment with a GP. I have before now written them all on paper, so that I do not forget any, and given them to the GP and the GP has put them to one side, refusing to read them. I understandably became somewhat upset and, when she saw this, she took the notes back and read them and we eventually worked through them together. At my last appointment, in order to try to encourage her to arrange for either a scan or an xray on my lower back (apparently scans can only be arranged by a consultant) I told her that I had suspicions that my back pain was from the region of the sacro-iliac joints and that might indicate AS. She then agreed for me to have an xray. I am fully aware that normal blood tests and xrays do not always give positive results but she was prepared to order further tests only if the xray came back as AS positive - which it didn't. So no further investigation has been arranged at this time.

The Rheumatologist in France said that my symptoms were low level at that time and he preferred not to start any meds so early in the disease as they all have their undesirable side effects - which I understood. There was no continuity of care between France and the UK (Wales) and this has been my problem trying to convince the GP here that my RA diagnosis had any validity.

As far as my stiffness is concerned, my back is very stiff when I get out of bed in a morning and it is very difficult even to lean over the bathroom sink to wash my face. The stiffness rarely subsides during the day though it eases with activity and worsens as soon as I stand or sit for say a meal or to watch TV. The IBS, Gastric Reflux, Mouth Ulcers and Dental Problems can all be caused by the Sjogrens Syndrome and the cold hands and feet can be a sign of Raynauds which is another autoimmune symptom.

As far as sleep and position problems are concerned - I tend to lay on one side all night, always have done, but I have noticed that I am waking earlier than before with the need to move to another position to stretch my back.

The only non-prescribed meds/supps that I take are antihistamines (hay fever) and digestive enzymes but I think it would be a good idea to speak with my pharmacist about interactions as you suggest - thanks for that!! Thankfully I don't have to take too many prescribed meds at the moment.

I have already seen two GP's at the practice and am considering another or changing practice altogether. But we really should not feel the need to do this should we? Writing to the French Rh. would be a good idea too

Many thanks once again. It's good to talk and I wish you well. Toni.

ToniT1504

Hello Dreamdaisy - thank you for taking the time to reply to my intro. Sorry to hear that you are having a bad time just now - funnily enough the warm weather that we are having just now has eased my symptoms a little and I can relax a little too. I told my GP that I fear how I will suffer this winter if last winter was a forerunner. I really did become quite depressed and desperate and I can sympathise with how you must feel just now. Do you have what are called 'flares' with marked worsening of your symptoms?

I have read today that there are over 100 types of arthritis and I think it is impossible for GP's to know all the symptoms in order to be able to diagnose confidently. As you say, GP's know a little about a lot of things and I find it quite arrogant of them to dismiss and trivialise your painful symptoms as 'just osteoarthritis that is a normal part of ageing'. Wait until they reach the time of ageing and see if they feel that arthritis of any kind is trivial and 'just a normal part of ageing'.

Indeed I have a close cousin who has Systemic Scleroderma, another type of auto-immune arthritis that I had never heard of, and who has recently had a serious renal crisis and ended up in hospital with only 15% kidney function. How can GP's possibly know about all of these types and all of the various indicative symptoms. Our life in their hands and their denial puts our well-being in jeopardy.

I have to say that the care I received in France was excellent and proactive and immediate with no months of waiting for consultations. Not so here!! The blood tests carried out in France showed a sero-positive indication for RA but the GP here would not even look at the blood report. The blood report here said that all was 'normal-no action necessary' but I can not decipher if the same test was included in the UK bloods. There are specialised blood tests that only Rheumatologists carry out as they are more indicative for different types of arthritis and the kind of stone-walling that GP's expect us to accept is intolerable.

I hope that you soon feel much better - you have my sympathies - and thanks for your kind words and encouragement. Do keep in touch. Regards. Toni.

stickywicket

I really wish I could help but, confronted with symptoms which are so numerous and defying GPs, I'm not sure what I can offer.

I don't know if AS differs from other autoimmune forms of arthritis but certainly for RA it's considered essential to get on disease modifying drugs asap. They weren't on offer when I was diagnosed which is why OA set in also to the extent that 20 years after the RA diagnosis I needed new knees. Based on this I'd say your French rheumatologist did you no favours by not prescribing them. With a current prescription too it would probably have been easier to convince the docs over here. If he did all the relevant tests, though, getting the paperwork might still be the way to go.

Alternatively, who diagnosed the Sjogrens? That usually involves a rheumatologist, doesn't it? Might there be some relevant blood tests there?
https://tinyurl.com/y66vuowo

Or, what about the suspected Raynauds? The diagnosis for that includes blood tests which might be relevant to AS. https://tinyurl.com/y39am2te . Might it be a route worth pursuing?

One thing puzzles me. In your original post you write “I now take all kinds of supplements” but in this last one you say “The only non-prescribed meds/supps that I take are antihistamines (hay fever) and digestive enzymes”. I can't reconcile the two statements..

Two things which arise from there, though, are that (i)hay fever is also autoimmune though many, if not most, people have it with no other autoimmune issues and (ii) digestive enzymes - I only know two people who have / had to take these. One had cystic fibrosis and the other had a life-threatening pancreatic problem. She has to take the enzymes after a life-saving operation. I won't be so rude as to ask why you need them but, unless you, too, are in such dire straits, they do seem to be the medicinal equivalent of using a sledgehammer to crack a nut. Maybe one for the pharmacist to pronounce on?

Might this help? https://www.nhs.uk/conditions/ankylosing-spondylitis/diagnosis/

ToniT1504

Hello again Stickywicket - I really do appreciate all your input and will spend some time looking at the links you kindly added.

With reference to your first paragraph - yes, this is why I am so determined to obtain that referral. I need to know exactly what is going on - even if they decide there is nothing and it is all in my head!! I don't really believe that so many indicative symptoms should be diagnosed by a general practitioner.

My Sjogren's was first investigated I think at the Opthalmology Dept of a hospital decades ago and I think they now have a 'lip biopsy' test which diagnoses it for certain. I have never been tested for Raynauds as my cold hands and feet are something that I have lived with again for decades. Perhaps you are correct and both should also be investigated.

With regard to meds/supplements that I take - to be quite honest with you I have related my story so many times recently that I think I lose track of my thoughts sometimes. I should say that I have tried numerous supplements over the years, many of which do not suit me, and I currently only take the digestive enzymes, antihistamines and an immune system booster called L-lysine. I will though speak with the pharmacist about interactions as you kindly suggest.

With regard to the digestive enzymes that I take, these are to help with symptomatic gall-stones and the digestion of fats in my diet. I researched supplements to help with gall-stones as I have elected not to undergo surgery and I have noticed that they certainly do help with respect to lactose intolerance etc.

As with everything else that has been going on this year, my hay-fever has been worse than ever - perhaps because we have moved house to adjacent to a nature reserve and ancient forest. I don't normally take anti-histamines but could not cope with the burning eyes, streaming nose and constant sneezing. Hopefully, as the season comes to an end, I will be able to stop taking these.

I think I said that I have multiple symptoms of all kinds and I think the GP thinks I am inventing half of them t2507

Thank you again for listening. Have a pleasant evening. Regards. Toni.

dreamdaisy

Thank you for your kind words, they are much appreciated. My OA can improve in the summer which is just as well as the PsA often comes out to play - despite the immuno-suppressant meds the extra stresses of grasses and pollens tries to fire up my immune-system which often responds. Then those pressures subside, autumn appears and the OA winds itself up again, responding to the damp and then the cold. I like to maintain myself at the moderately grotty level, my main medication for the PsA was changed earlier this year and it did not suit hence my current malaise: I have spent the majority of my time in bed as that is where I am the least uncomfortable. I have said in the past - and meant it - that although I have a disease I am not ill because I feel well in myself; for the last five months the opposite has applied. I will soon be returning to the former medication so I hope that enables me to spring back to the giddy heights of moderately grotty!

I think there are around three hundred kinds of auto-immune inflammatory conditions and the various types of auto-immune arthritis are on that spectrum. Add the complication of sero-plus or negative and you need the experienced view of a rheumatologist. If a GP orders blood tests for RA and they come back sero-negative for rheumatoid factor that does not mean that the patient does not have RA. The GPs I occasionally see now are better informed but I reckon I sometimes know more through my experiences of arthritis. When we least feel like it, or feel least able to do it, we have to stick to our guns and demand that acrion is taken, referrals are made etc. The delays are horrendous but with an ever-increasing population, the greater percentage of whom are ageing, it's hardly surprising.

I cannot remember what else I wanted to say. :oops: DD

stickywicket

I must confess I'm broadly 'anti-supplements'. I'm with the NHS that eating a healthy diet is the best way of getting them. Having said that, like everyone else on methotrexate, I need folic acid and, like everyone else of my age (73, with 58 years of RA behind me and DXA cans which indicate I might or might not have osteoporosis – the RA clouds the issue) I take my prescribed calcium + Vit D supplements. That apart I do it with food.

One thing I'd never take is anything to boost my immune system. Autoimmune diseases are caused by our overactive immune systems. They don't just attack 'foreign invaders' such as colds, infections etc but they then decide this is so much fun they'll carry on so they attack our own bodies too :roll: And keep doing so until dampened down to some extent by immuno-suppressant meds. So boosting them is the last thing we need.. If you stop them you might even find you don't need the anti-histamines though living near a forest might not have been the best move for that. Apparently, tree pollen can be one of the worst culprits. I use a prescribed nasal inhaler - as little as possible.

I'd guess that your GP could prescribe something for your gallstones which might be safer than the supplement you take. Meds have to undergo rigorous safety checks and supplements don't. I actually do have gallstones. They showed up once on a scan for something entirely different but either I don't notice them or they are well-disguised by my hiatus hernia and GORD

ToniT1504

https://www.versusarthritis.org/about-arthritis/conditions/ankylosing-spondylitis/

Hello Yvonne - hope you are well Thank you for the above link to info on AS. I had read some of it previously but it is very helpful and I wish I could send this to my GP for her to read - especially the sentence that reads " AS should be diagnosed by a Rheumatologist". This applies to all forms of Arthritis in my opinion and GP's should not put you through a 'health means test' before referring you to a consultant - I know for a fact that this is what is happening these days as the NHS is so short of both money and staff.

I have been amazed at the response to my posting and the ladies in question have been very helpful and supportive. It certainly helps in not feeling so isolated and helpless being able to discuss symptoms etc with others who have been or are going through the diagnosis process.

Many thanks again and kind regards. Toni.

ToniT1504

stickywicket wrote:

I must confess I'm broadly 'anti-supplements'. I'm with the NHS that eating a healthy diet is the best way of getting them.

As I have dietary limitations, supplements are my best way of making sure that I am ingesting what my system needs and both I and my husband have found that L-lysine prevents most of my problem with mouth ulcers caused by the Sjogren's and my husband has rarely suffered a cold sore since taking it. We only take the minimum dosage and it works for us both.



I'd guess that your GP could prescribe something for your gallstones which might be safer than the supplement you take. Meds have to undergo rigorous safety checks and supplements don't.

My gallstones were also detected when I went for a scan to follow up on my PCOS and the only treatment offered to me has been surgery, which I do not wish to have as it is not without undesirable side effects. I now struggle to digest meats, fried food, milk products etc and the digestive enzymes have helped tremendously.

You have obviously done a lot of research of your own, or perhaps you have been a health professional at some time , and I appreciate your advice and thoughts.

Many thanks again - you have given me lots of ideas to discuss next time I see a GP.

kind regards - Toni.

ToniT1504

dreamdaisy wrote:

Hello again dreamdaisy - thank you again for your reply.

I like to maintain myself at the moderately grotty level, my main medication for the PsA was changed earlier this year and it did not suit hence my current malaise: I have spent the majority of my time in bed as that is where I am the least uncomfortable.

You have my sympathy dreamdaisy - and I hope you soon feel much better when you revert to your earlier meds. You really should not have to suffer so.

If a GP orders blood tests for RA and they come back sero-negative for rheumatoid factor that does not mean that the patient does not have RA.

Yes I agree with you here. When I returned to the GP for the results of my blood tests she simply stated that there was 'No sign of RA so it must be OA that comes to us all with ageing'. I tried to put it to her that negative results do not necessarily mean that a patient does not have RA, I got that steely look that said 'Who is the Doctor here?'. That was the end of the conversation really and I was only granted an xray when I returned a few weeks later complaining that I was in agony and could not go on and indicating to her exactly where the pain was concentrated, in the locality of the sacroiliac joints to the left and right of my spine. I am finding the whole process so very frustrating and you just feel like giving up, but that is not fair on partners and family around us.



I cannot remember what else I wanted to say. :oops: DD

Must admit I find it hard to concentrate these days and I lose track of what I am reading or what I am trying to say
Kind regards, Toni.

dreamdaisy

I have never regarded myself as suffering and never will: health-wise life has been rough since birth so this is nothing new. Some aspects of childhood were dramatically improved by the invention of steroid creams (eczema sorted) and inhalers (asthma controlled). Now the meds for the arthritis enable me to do more, my versions of exercise have improved my stamina and thanks to having done the hard yards, retirement is a boon!

OA is the most common form of arthritis and as such it can be easily dismissed as relatively unimportant by those who should know better. Yes, it can come as a result of ageing but people in their twenties are being diagnosed. The auto-immune can begin even earlier, the youngest I have come across on here was eighteen months old and had to be injected with meth as he was too young to swallow tablets. Your GP should update her knowledge but probably won't, I know that doctors are bombarded with research findings and although we are unique to us we are anything but to a GP.

I hope you won't take this amiss but people on here tend to avoid the paintbox to the right: yes, it's all very pretty but quite a few have trouble with their vision and I have struggled with the light green. Stick to the darker shades and people may feel more inclined to reply (although not many do on Say Hello). More people look in on the Living With Arthritis board so once you know a little more about your situation it may be a good idea to post on there. DD

stickywicket

Health professional No, just a practising arthritic

One learns a fair bit over 60 odd years of it (some very odd ) and I do try to steer people away from the 'misinformation sites' and the money grubbers.

To me, it's all quite simple. Autoimmune arthritis requires DMARDS. Both autoimmune and OA require a healthy diet and weight, exercise, as few meds as possible, a lack of cigarettes and an optimistic, outward-looking attitude. After that, it's just a matter of enjoying life. And I do And I hope you do too

dreamdaisy

It can be difficult when we have overlapping condions. Remember there are no cures for auto-immune junk, merely the temporary alleviation of the harder symptoms and that stimulating the immune system will aggravate auto-immune conditions. Give me OA any day of the week because you know exactly where you are with it. My neighbour had perfect OA, only in one hip, hip duly replaced with no quibble about age as she was 72, now she's right as rain. She still has the temerity to grumble about it though because she can only garden for an hour. Some people just don't know when they're well off. DD

ToniT1504

Thank you Stickywicket and Dreamdaisy for all your wise words and advice. It just remains for me to try persuading my GP that I should be referred to a Rheumatologist for a proper diagnosis. I also intend to research local gymn and warm pool facilities in the area as I need to build both strength and stamina and I believe that water therapy is an excellent aid to reducing pain and stresses on the joints. I was prescribed 13 weeks of warm water pool therapy, massage and physiotherapy by the Rheumy in France but, unfortunately, as we were moving back to the UK soon after, I did not manage to take up the prescription. The Physio's in France are excellent, as my husband can attest after falling down the concrete stairs in our apartment and smashing his already surgically repaired shoulder on the floor.

Sorry about the coloured font - I thought it would distinguish my text from your quoted text but obviously it made things worse for you. Won't do it again - promise No offence taken 8)

I wish you both well and enjoy the rest of our summer. Will keep in touch. Bye for now. Toni.

dreamdaisy

I think it rather sad that your GP has such a closed mind and arrogant attitude, if there are others in the practice I wonder if one of them wouod be more 'affable'? My practice has six for around 30,000 patients so seeing one is not always easy and you never know who are going to see which is why I rarely bother them. Please keep in touch, I for one would lile to know how things unfold (I'm nosey thag way ). DD