Recent Diagnosis Any Help/Advice?

Lamchan12

Hi all.

I was diagnosed in Feb 21 as having Osteoarthritis in multiple joints, hands, fingers, wrists ankles feet and spine. I have ben waiting for a diagnosis a few month prior to Feb 21. I was also diagnosed in Sept 20 as having peri osteopenia and polyarthralgia after X Rays and blood tests as i have been in quite a bit of pain since April 19 and it has slowly gotten worse. I am also extremely tired and on quite a bit of medication. I also suffer from Chronic Back Pain since 2007 and have been under the pain management clinic at the hospital for many years having Facet Block injections and Radio Frequency Ablation on my lower spine.

I am only 33 years old and have a husband and 3 children 10, 13 & 14. I work full time in HR. I am struggling to cope at the minute and i am trying to manage work/home life as they are both demanding roles. My hands are so sore and i am trying to carry on but it keeps me awake at night with the pain and stiffness and my thumb has gotten really bad over the past few months too. my elbow has started to ache hurt like my hands so i think i have also got it in there. I am on Nefopam, Co-codamol, Etodolac, Omeprazole and Evacal and have Fenbid 10% gel. I wear hand and wrist splints they help somewhat in aiding my joints.

I was seen by a consultant at rheumatology in Feb 21and they said i had early osteoarthritis and exercise is best for this and given a booklet on exercise, i was also told the MRI i had last Apr 20 had roughness and that the osteoarthritis was on my spine. My pain management consultant has not mentioned this to me they discharged me as they could not help me anymore as what they were doing was not giving enough pain relief in my spine obviously i didn't know i had arthritis in my spine at that time.. i was not really told much else. the letter i received from the consultant said i also have osteophytes on quite a few joints, and mild crepitus in my knees too which i was not told at the face to face meeting.

I am struggling i how to manage with the pain and try to carry on as normal. i don't know if this is normal to suffer really badly with the level of pain i am in. it is not letting up and seems to be getting worse. I haver not managed to get any help or advice anywhere else and i am unsure as what to do or where to turn to. my thumb at the minute is really bad that any movement is sore and constantly aches.

any help or advice would be much appreciated.

Shell_H

Hi @Lamchan12 - welcome to the online community!

You have had a number of different diagnoses over the past couple of yesrs, and while you have been to a pain clinic and had tests etc, they've decided there's not much more they can do to help you currently - especially with you being in your 30s. They left you with advice that exercise helps and a list of medications and different conditions. You're now struggling to try and keep you normal life - both work and home - while coping with being in pain all the time, being exhausted and feeling lost.

Firstly, we have some links on information which might be helpful. I've also added some info below which works for me, or are ideas which may help.

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/exercises-for-healthy-joints/

TL:DR - Can you make adjustments at work to help (like voice control or typing on your computer)? Can you apply for PIP? What is it you want to focus on which makes you happy? I suggest digging down on what you can do to improve your sleep.

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I too am in my 30s and I've found myself that doctors aren't that interested in helping overly with arthritis at this age. I will say that exercise really does help - in two ways: it can help strengthen the muscles around your joints and painful areas, which means your muscles then take on more of the "work" involved around the joint and takes the pressure off your bones and cartilidge, which is where the pain mostly comes from in arthritis and related conditions. Stretching also helps a lot, as you often contort yourself oddly, normally without even realising, to help alleviate pain in some areas. This puts your body and muscles under unusual pressure in ways not meant to - maybe you lean more to one side or put more pressure on one leg more than another because one knee hurts more, or you hold your shoulders oddly as your back feels better that way. Stretching can help relieve some of the pain caused by the contorsions you do without meaning to, which just adds to the pain the arthritis is causing you.

Trying to balance work and a chronic condition is very hard. Are there any adjustments your work could make which would help? Would using voice typing software (and a comfortable headset) help with your hands? Would it be worth looking into more ergonomic items, such as chair, supports or similar? Would it help if you worked from home one or two days a week (if possible given you're in HR)? Your work have a duty to help you with any resonable adjustments to the working environment to support you. Have a look here for information on this from citizens advice. Some of it will be you having to lead your work, as they don't know what may help you.

You also could apply for PIP - this is a benefit for people with long-term conditions which affect their daily lives. You can be in or out of work, and the amount you get varies on how your condition affects you, not on what your condition is. There is a large questionnaire to fill in (if you apply for this, definately check out advice online and use the scoring criteria to help you form your answers) - make sure you answer it honestly but with your worst days in mind. It's too tempting to think "Oh, I can do that", but when you think about it you realise you don't do it, or it hurts, or you need someone to remind you to do it, or you cheat and do something else. It's depressing to fill out, but I do advise it. Then you have to wait to get an assesment, which is talking someone through the answers you already gave, then you get the result. It's a very long-term process. The DWP take months to get back to you. But this can help a bit financially, which can help with stress and mental health in general.

On your mental health, work-life balance issues, you may have to have a look at what you need to make you happiest. Do you need to work full time? Would you be happier dropping some hours, getting more rest, and being able to be more present with your family? Do you need the social aspect of work? There are no right answers, just the ones which work best for you. The fact that you've said the pain in your hands and wrists has gotten so bad it's preventing you sleeping is worrying - this implies to me that you are overworking your hands and wrists (I'm guessing at a keyboard at work) and this is haveing a huge knock-on effect on you. You cannot overstate how important getting enough sleep is, especially when you're in chronic pain. Dealing with pain is exhausting - dealing with it all the time more so. You need your sleep. Just getting enough sleep can help you have less pain. I would focus on this as your most important aspect to fix. If you take two weeks off work and seriously rest your hands and arms (make your kids get things for you, be extremely lazy) does this affect your pain levels? Do you sleep better? It may be worth finding out.

I wish I could help more. It sounds like you've done all the right things as far as medical consultations go. I'd possibly check out any supplements which may help (although they often don't have an extreme aid) and keep up with exercise as you can (I see your life is very busy, which definitely makes finidning time for exercise much harder). Definitely have a think over what it is you need for your life to be happy, and do look into what adjustments your work can make. I'd so look into ways to use your computer by voice to help reduce strain on your hands.

If you need anyone to talk to I'm here - I'm happy if you would prefer to PM me or chat here. There are also a lot of advice and help on related topics in our Work and Financial matters discussion board. Always remember to be kind to yourself - chronic pain is especially bad on your mental health, and this can lead to a bad spiral. Remember you are worth the effort on yourself. Apologies this is very long!

Lovely to meet you,

Shell