arthritius and lymphoedma

hi im new to the group i was just woundering if eny one could give me some advise on arthritus i av primary lymphhodeama wich i av ad since 2005 about 12 months ago i was in so much pain in my left arm shoulder and hand i went to see my nurse and was advised to go to ane at my local hospitial i ad a xray also a scan they put it down to pressure but 2 weeks ago i could not take no more off the pain i was seen by my gp and sent fr xray again i got called yesterday and the doctor said i ad servea arthritus and he was referring me to physio and that i needed to talk this over with my nurse im in a lot off pain and my left hand fingers lock this is worrying me as i avent got much info on it .eny advise would be really helpful thanku

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  • Sorry to hear of your news. I have a lot of Arthritis also and so does my husband. I don't have it severe in my shoulder, but remember being kept awake at night with the pain in the right shoulder before I had xray and diagnosis. My severe arthritis is in the top of spine (neck and top of back -thoracic ). I took Amytryptiline for a short time only. I had to, so I could have some sleep, but shoulder arthritis pain under control now and I've started back swimming 2 to 4 lengths twice a week which is good for arthritis (have in both knees and hips too) and Lympthoedema.

    My husband's Rt shoulder is extremely severe Arthritis and his lower spine. He once had an injection. I haven't had any. I used to have a lot of physiotherapy but don't have it now.

    I hope you, your physiotherapist, nurse and GP can help to get the pain under control. Need to be careful to keep warm and rest that shoulder/arm & hand till pain, stiffness & locking eases. Have you seen GP yet about fingers locking? Could you phone Physio department and find out how long you have to wait?

    What did GP give you for the paid? Can you take Ibuprofen?

    I only use paracetamol and Ibuprofen occassionally when pain too severe.

    Have you tried heat pads/ hot water bottles? Also try - put a towel in the tumble dryer for about 5 - 10 minutes, then wrap around neck & shoulders. And a smaller hand towel to wrap around your hand.

    Relaxation is very important though not always easy with the worry that new diagnosis and more symptoms brings.

    I wonder if warming your hand up with a hot towel, then gently massaging your fingers using some moisturiser would help? I am not medically qualified, just a thought. Then wrap another hot towel around it.

    Hopefully your physio will give you some exercises to do regularly in between appointments. As I think you will maybe need daily physio to do at home as well as appointments.

    My arthritis pains vary, I try to keep positive and active.

    Would it be worth popping back to see GP about fingers locking and asking for some pain relief while waiting for Physio appointment to come through?

    Hope you get a good physio and find the treatment session very helpful.

    X🐥

  • thanks mary for the advise im waitin on appointment to see some one from the pain team i take 150 mgs off amitriptyline im also on co codamol 30 /500 but they dont seem to be helping with the pain at the momment i do try to be active and positive but due to whats been going on iv ad no bld or mld for months i will phone the physio in the morning than u fr the advise x

  • I didn't take the Amytryptiline for long. I had sleep depravation with the pain and they did give me some sleep! Strangely though, I was wakened at 3am one night by severe pain in Rt knee whilst on it!

    If Co-codamols don't seem to be helping will you come off them? I hear they can be addictive if taken long term. I can't take codeine due to it stops bowel movements and I don't have normal bowel function to begin with so can't risk constipation. Do you take Lactulose medicine? And drink loads of water?

    Is there any reason you can't take Ibuprofen tablets. Or have you tried any of the gels? Topical Ibuprofen or Voltorol?

    I find combined paracetamol and Ibuprofen helpful for occassional short term relief. Starting with one x 200mg Ibuprofen increasing up to 3 x 200mg if necessary.

    By the way my Amytryptiline were 10mg (one at night).

  • Maybe there are finger exercises that would help. Try google first, maybe there are some you tubes about finger exercises.

  • By any chance when you sleep are you leaning on that arm or is it under your body and getting pressure on it. That happened to me, and my gp asked me that question, and that was creating the problem.

  • no marilyn my arm is upright on 2 pillows .

  • From personal experience, I ask for Co-DRidamol - it's slightly different and works better for me.

    I am having massage (paid for by NHS My Care My Way) on some parts of my body with arthritis - only some because it doesn't seem to work on every part but works very well on hands.

    Then I have MLD but have to pay for that myself.

    Good luck

  • hi veriter i was aving MLD also BLD on the nhs 3 times aweek but now due to nhs cut backs this service was not availble to me and other suffers as the lymphodeama was not caused through cancer but i av now got a appointment on the 5th december to messure me up fr sleves gloves and legs support so thats at start but i am going to try and enquire to see iff theres a local place eny were who could provied MLD as it did help me thanku .

  • Independent lymphoedema therapists can be found on mlduk.org.uk/therapists

  • thank u lynora fr the link

  • I can understand your pain, I have primary lymphedema Tarta no one seems to know how to treat my condition, it is all over, I have been suffering from my thirties and now I am 65yr it is getting worse with age.

  • Are you cared for by a Lymphoedema Clinic? Does anyone else in your family have primary lymphoedema tarda as it is congenital?

  • I have a lymphoedema specialist, I have angeodema and crones disease aswell. A massage machine, brace strap for my legs, and steroid treatment, I try to run a business with my husband and keep things as normal as possible. The walking and movement of my arms is so painful. I find as I get older it is getting worse.

  • A double whammy in no uncertain terms. Very difficult to manage swelling with the other problems. Have you been receiving pain management?

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