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Arthritis Action
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Newbie, first post please can anyone advise regarding pain?

Hello everyone,

I'm new here and wondered if anyone can offer some thoughts or suggestions as I'm finding I have increasing joint and muscle pain. I'm not sure where to start with my post as I have a mixed bag of symptoms some of which I know (and suspect) are complications of me having Inflammatory Bowel Disease.

Trying to cut a long story short I'm 51 and have had increasing joint pain since around 2009. I noticed it in my knees mainly and as I'd had a fall whilst putting something in my car caused by an uneven path I put it down to that and foolishly didn't get it documented by my gp despite being in pain and having bruising to both knees. I'd also had painful knee/s in late childhood and was given a warming cream to rub in by the gp. As the yrs went by in my 20's I had several episodes of severe pain in my elbows if I "overdid" things such as cleaning/washing the car or painting the house...as I was starting nurse training I didn't mention it.

In the last few yrs my joint pain has become lot worse and is now widespread and is making everyday things a struggle. I am really struggling with leg pain in both legs & knees and have had a painful shoulder for almost a year unbelievably I have had so many other things to get sorted out as my Crohn's and other abdominal problems have caused chronic anaemia, low b12 folate deficiency and low vit D. I can no longer take oral supplements or vitamins (used to take cod liver oil liquid) as they all give me dreadful diarrhoea and pain. I have iron infusions at the hospital day unit and in May I had a vitamin D injection, unfortunately the level only came up to 15 from 10 after the injection. My IBD nurse is currently reviewing my blood tests with regards to arranging another vit d injection for me.

My mum has had osteo arthritis since her middle twenties and we both seem to have pain with changes in weather. I saw my gp a couple of months ago who did some blood tests but as they came back normal he thinks the joint and muscle pain is caused/related to the Crohn's. I'm taking daily cocodamol and most days tramadol either for abdominal pain or joint pain. I am constantly exhausted and have great difficulty concentrating I used to havr a very good memory but not now.

I have an appointment with my ibd nurse in a couple of wks and am planning on going to the walk-in physio before I see her as my shoulder is very painful and I am really struggling to wash and dress and can't sleep very well. I did have a gp appointment for it but gave the appointment to my mum as she was in a lot of pain with her shoulder too...we both seem to have got worse during the heatwave and since the colder weather has started.

So sorry for such a long post...feel like there is so much to sort out that is ongoing and feel stressed as mum has poor vision and didn't get good news today she has to go to the hospital urgently so I need to get myself sorted as much as possible to be there for her as I'm her carer but I am really struggling with pain and fatigue. Wondering if I should get a referral to Rheumatologist but gp didn't think so when I asked a few months ago he thinks further vit D injection will help the pain. I also am very stiff when I get up out of a chair or out of bed I try to mobilise as much as possible but my legs or back hurt so much I have to keep stopping to rest...thats just walking about the house or upstairs.

Edit as forgot to mention I had xrays in 2012/13 that showed arthritis in both knees I think mild to moderate but don't have a copy of the report. I also had tendonitis plus possible frozen shoulder in 2011, it came on suddenly after I'd painted a ceiling and needed a cortisone injection and physiotherapy for several months. I've also had 2 episodes of extremely painful rib pain lasting about 3-4 weeks. I mentioned it to my gp but it was at the end of an appointment for my Crohn's which had been flaring so had to take priority so there wasn't much time left to discuss it and it had resolved by the time I could get to the gp so a bit tricky to expect a diagnosis then. From my nursing knowledge I think it may have been costocondritis.

I also have had my periods stopped for prolonged times to treat severe endometriosis and take steroids for my Crohn's flareups so I am bit worried about osteoporosis too...must sound like I'm falling apart lol...

I cannot believe how long this is thanks if read this far...

Any advice very gratefully received.

Many thanks in advance.

13 Replies
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You do have so much going on, and I'm no expert, but as you already have inflammatory bowel disease, that would suggest to me that you could possibly have infammatory arthritis such as RA. Is there another doctor you could see to review you blood test results? It would be interesting to see what your ESR and CRP results were. XX

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Interesting that you say you had painful knees in late childhood. Then you comment about various shoulder and elbow problems. Has anyone in your family have hyper mobility syndrome. Some people call it hyper flexibility or double jointed. My wife had similar symptoms to yours and it was hypermobility. In a lot of people it's not a problem but in others it can cause soft tissue problems as the joint bend too much in the wrong direction.

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OMG you poor poor lady what a life you must lead and it must be very hard to positive.

I have O/A in my neck and very severe in my lower spine and both my feet.

I have Tramadol but only use it if I really need to and am in extreme paid as it sends me gaga!!! I am in the clouds somewhere when I take it and definitely not in control of anything I do. Avoid it if you can is my advice. my pain relief specialist told me as a painkiller and like ALL painkillers it is only 50% effective so what's the point to feel soooo spaced out.

I do take it as and when required but only when in extreme pain.

It's an opiate and can become very addictive too.

Stay away from it if you can.

I hope you can find relief soon xx

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Hi all.

Just wanted to post a big thank you to you all for your replies and thoughts, I'm really grateful as I'm finding it hard at the moment to try and keep on top of everything. I've spend so many hours today making calls to check when mum is going to be seen as her ref was urgent. Luckily I checked as the fax had not been sent. It has now been received and she has an appointment on Tues as it may mean urgent treatment for her vision. I had to collect a prescription earlier that had not been delivered and the gp had written to me to ask to see me followingmy blood tests last week. I have an appointment in 3 weeks so will ask about the joint/muscle pain again. In the meantime I will try to get to the walk-in physio to see what they think before my review with the ibd nurse at the hospital in 2 weeks.

Thanks again for taking the time to reply to my very long post. Sorry my response is late I just wanted to say thanks but will post properly asap.

Xx

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Hi gutfeelings have such empathy with you, was like reading my own post the similarities are endless except I haven't been diagnosed with Chrons but IBS about 25 years ago! Also my mum and I had exactly the same symptoms I am slowly discovering. My pain management dr won't have it however, no empathy whatsoever, says at my age 57 everyone has arthritis, been simply told to join a gym and do every class of yoga Pilates and tai chi and he will see me in 3 months and he guarantees me 100% I will no longer have any pain???? He doesn't want to hear about my list from childhood problems to now whatsoever, not interested in the history or symptoms, can tell he has labelled me an unhappy woman of 57 who just likes to moan and is out of condition cos I don't go to a gym, I feel it's a bloody cheek if I'm honest!!

I have everything you have, osteoarthritis, degenerative disc disease, had three frozen shoulders, many steroid injections, shoulder, hip, facet joints. I get awful bloating pain, most recently for 6 weeks, affecting lower back and bladder, just so uncomfortable that didn't want to stand or walk. My knees lock and walking barefoot is painful on those bones too. I don't have low iron but low vit D but just take monthly capsules. I had a hysterectomy last year and they told me I had endometriosis and adenomyosis (similar). I've also got pain on ribs, have to touch them to feel it though and it extends under arm/side of trunk, pain management tell me all my pain is muscular, not my joints at all (yes it bloody well is) and therefore I've to get fit. I'd like to know where the money will come from, I only manage to work 16 hours. I get very stiff from the sitting and on waking. My inflammatory markers are always high, do you know what yours are? Ask about CRP if you've had a recent blood test. I was also told my rib pain was chostocondritis but it isn't because I've literally had it years, it's apparently all soft tissue/ligament/tendon and muscle pain. I would suspect a referral to rheumatology might be in order but it seems unless they see something in your blood to warrant that then they might not. I got referred because of pain, my hair falling out in handfuls and my raised CRP, then they did their own set of blood tests but my hair had stopped falling out by then and other than inflammation and low Vit D everything else was negative so after three visits I was dismissed from them also.

I am so sad for you and your poor mum, you both have my empathy but you need more assistance from the medical profession and with that I wish you good luck and someone to listen and understand and join all the dots.

Take care and best wishes

Kay x

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What a crappy doctor you have!😡 Hope he has aggressive OA when he is older, better still - soon, then he might know how to treat you better.

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Thank you Constance that really made me laugh 😂

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You must have so much on your plate with your mother going into hospital to boot. Ive had ankyolosing spodyolosis all of my adult life and know what pain can do to some one . You must see a rheumatologist as soon as possible . If your GP will not give you a referral get a second gp and request a referral to a rheumatolagist . you should also request a referral to a pain clinic .

Some specialists have waiting times depending where you live, but to have a date that some one who specialises in pain will see you will put that window forward when your pain will end.

I feel for your pain

Demand a specialist

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Hi all

I was hoping to post a proper thank you to you all for your replies and thoughts, however I'm feeling quite unwell at the moment. I think the anaemia and low folate plus vitamin D deficiency combined are partly to blame. I just hope I can have my Vit D injection soon, also my b12 injection is due so that could be another reason...feel so unwell at times having to miss meals to manage my abdominal pain doesn't help either.

Sorry to sound like a moaner.

Thanks again for taking the time to reply hope you are all as well as possible.

Xx

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Have you read up about an anti inflammatory diet? I changed from margarine and sunflower oil to butter and olive oil over twenty years ago, because I had read there could be a connection with breast cancer and polyunsaturated fats. Later on I learnt about the omega 6 omega 3 balance and it’s importance in arthritis and I realised that the painful swollen finger joints I had suffered from got better and returned to normal after I had changed fats.

Improving your gut bacteria may be something else to explore. Cholesterol does apparently play a part in the production of vitamin D. We have been told for years that the lower our cholesterol levels the better it is. The advice has also been to drink skimmed milk, eat fewer eggs and put on sunscreen as soon as we go outside, all of these things contribute to low vitamin D levels.

I do hope you find ways to improve your health. Your post has made me realise how very small my problems are.

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I feel so much empathy with you. I have found that Magnesium Oil massaged into the joints really works. Not sure how it works, but it does. I also find that it relaxes me and I can sleep better. Hope this helps xx

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That is really interesting. I have found massaging very effective after a fall and I have just started taking magnesium, but I can only tolerate a third of a tablet. Where do you buy the oil, on line or in health food shop?

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I bought it online from Amazon. Hope it works for you xx

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