NEWLY DIAGNOSED MILD FIBROMYALGIA AGAINST A BACKGROUND OF OSTEOARTHRITIS

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Hello

Further to my post a couple of months ago I have now seen a consultant rheumatologist. I had blood tests and xrays. The Copy of the letter to my GP says confirms the arthritis in knees spine neck not sure about hips and new one right thumb. I had mild pain in 12 of 18 tender points? I am also due to see gp as it was found my B12 was 134 described as slightly low. I also take Ranitidine for gastritis which I understand can cause low levels. I have IBS which I know is common with fibro patients. The consultant mentioned Amitriptyline ,Duloxetine and Pregabalin. I know about the first one but loathe to take it because is cause dry eyes and I have blepharitis and glaucoma. Anyone take any of these drugs.

The worst pain at the moment in the left shoulder and neck going down the arm. The top of arm is particularly painful at times. The other side is much milder. I am at a loss of what to do. The letter does not seem to make any references to arthritis so am not sure what is causing what pain. I just know that am concerned that at age nearly 72 things will only get worse. My husband has his own problems type 2 Diabetes, Chronic asthma and arthritis hip which is giving him a lot of pain at the moment. Any one advise please. How can I tell what pain is what. Thanks.

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  • Posted

    Hi Hon. I really sympathise. Multiple causes of pain can be really difficult to cope with. I too have OA in various places, - ankle (due to a major injury), thumb joints and more recently knee and upper spine. I also had more widespread pain issues which didnt seem to relate to the OA and then got diagnosed with a ruptured bicep tendon and rotator cuff injury. (they found this out by doing an ultrasound scan) I got referred to a rheumatologist who to be honest was the least helpful medical professional I've ever met and she said I should take amitriptyline, which I did for a while. It helped with improving my sleep which had been effected by waking in pain but it unfortunately caused mild hallucinations which I hated, so I stopped taking it. She then suggested gabapentin but I have a friend who took it and became very quickly addicted, having to take higher and higher doses, so I refused. I got the impression then that I was a waste of space to her and she referred me back to the GP stating there was nothing more she could do. I've become intolerant of anti inflammatories so my GP told me not to take the naproxen I was on or even ibuprofen, so all that was left was paracetamol, which really doesnt do much. I've started to research other options for pain relief. One thing I found works for the arthritis inflammation is ginger. I mince it up and mix with body lotion or hand cream and rub into my thumb joints, then leave on overnight - it's amazingly good and I dont get woken up by hand pain in the night anymore. I would also recommend meditation, particularly mindfulness which is very good for pain issues. Much of the non specific pain we experience is due to the body being under stress - with your own and your husband's health issues, this is very likely and meditation can help calm the adrenal system. Other than fibromyalgia, we're also prone to polymyalgia as we get older - unlike fibro however polymyalgia is a rheumatic condition and can be diagnosed by blood tests. They may already have ruled this out for you but it's worth asking about. Getting a diagnosis of fibromyalgia doesnt really change the outcome or the options for treatment (the word fibromyalgia is just a generic term - fibro meaning fibrous and myalgia meaning pain) and honestly they just label it that because they cant find any specific reason for this type of generalised pain. Unless blood test have revealed any specific vitamin deficiencies please avoid taking vitamin supplements some are totally unnecessary and you'll just end up with expensive pee (the term my GP used) or worse, could cause a toxic overdose - Vitamin A for example is quite dangerous if an overdose level builds up particularly as you already have sight issue. Some people think taking Vit C and Vit D will help but the body usually makes enough of its own and any excess is just flushed away (eg the expensive pee mentioned above), so a waste of money buying supplements. Try to get a referral to the pain clinic, they can often come up with non medication options.

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    • Posted

      Thank you loxie for your kind words and information. I am so sorry you too are suffering and that you did not have a good experience with the Rheumatologist. I must say the lady I saw was really nice and helpful, but I know that is not always the case. I am not too keen on the various drugs they offer for Fibro because of the side effects especially as I have IBS C and glaucoma asthma and also have suffered from anxiety although not to bad at the moment. I have the IBS under more or less under control due to doing the Low Fodmap diet but still have some foods to reintroduce to see if they bring on symptoms. So I too don't want to take anything that will just make things worse because I react. You mention arthritis inflammation and the ginger with hand cream etc seems worth trying especially for the thumb. This made me think of a cream my gp gave me some time ago although she said it was designed for arthritic knees and instructions seem to say arthritis in general. It is Capsaicin cream which is in active ingredient in chill peppers. It is licensed for use with OA and shingles pain. It was given to me by my gp as I can't take ibuprofen etc and was not really wanting to use the ibuprofen cream although my doctor said to try. I did use the Capsaicin but did not really give it a chance probably one of my times when I was feeling down. I think I will try it again in was the ginger which made me remember it. I think though it might be better used in small area like the thumb. You can get it on prescription or off. Look it up online might help. I also know they do a nasal spray with same ingredient for rhinitis which I have and hayfever this time of the year although not badly. Some really swear by it but was unsure about putting this up my nose. I just take an antihistamine as I can't take steroid spray as it affects my glaucoma. I do know about mindfulness and have used some of the videos on line. With regard to vitamins I am already on VitD and calcium as I have Osteopenia which is low bone density but not bad enough to be osteoporosis. Honestly there is not a part of my body which does not have a problem L O L. I have to see my gp about the low B12 I think I need a review of my medication although I have blood tests every year nothing about B12 has showed up before. I have an appointment in 2 weeks my gp has not received the letter from the consultant yet although I have. I have an underactive thyroid since 1993 and I know that can cause all sorts of problems if the dose of thyroxine is wrong. I don't know anything about polymyalgia or how it is diagnosed. I had blood tests for inflammation markers and they were negative but the B12. low. Thank you so much for your suggestion about the ginger. I hope you will continue to stay strong and enjoy your life.

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  • Posted

    Hi Libralady, Sorry to hear you are suffering. All symptom s are same as me. I went to doc's last week and she agreed that it is difficult to tell which pain is which. I take Gabapentin which I find very good, Also Amitriptyline plus co-codamol. I always was on the go working, doing something or another but now I can hardly do anything some days. I'm 77 years old now and 'yes' getting worse. I feel for you with a husband who is suffering as well. Just try and help and understand one another best you can which I expect you do. My fella has dementia so not much help to me. I'm happy to be alive though and enjoy what I can. Thoughts are with you. Love and hugs from Josephine.

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    • Posted

      Hello Josephine Thanks for your reply. Sorry you too are suffering. So sorry to learn your partner has dementia. My Dad had Alzheimers for 4 years so I know how hard it is. I hope he is happy in himself. Once my Dad got through the early stages he was much calmer and died at age 80. You might read my other reply to Loxie about both amitriptyline etc so not sure about taking these. I am sorry you are getting worse but congratulations on being 77 and still happy to be alive. You are right enjoy what you can for me it is the grandchildren I have 5 aged between 3 and 22. Only two of them live near. One of them is in her end of School play/musical and despite having to sit on a hard seat for a couple of hours in the school hall I am determined to go and watch her perform. Will have to make sure I do my neck exercises before going. I loved doing this with my own 3 children so it brings back memories as well. Yes we just must all plod along and take each day as it comes. When I have been in pain and laying down with heating pad etc all day I think can't take this anymore. The a couple of days later am able to go shopping or to my daughters for dinner. I wish you and your partner well. Love and hugs to you as well. Carol

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  • Posted

    hello I have just read your message, am same age as you and was diagnosed with fbm 6years ago, also have osteo arthritis!! have now come to terms with the help of a wonderful counciller of pacing myself!!!

    Have always been a very active and full of life person so found it hard to accept to slow down when I HAVE A FLARE UP, be gentle with yourself and talking about it has really helped, I dont bore friends with it but talking to a proffesional has really helped me so much, I Try to stay positive and when the pain is bad I HAVE to rest, dont give up and dont give in to it

    my thought and best wishes go to you

    Christine

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  • Posted

    hi I am so very sorry about your diagnosis but nothing worse than being in constant pain I have fibromyalgia and spondylitis arthritis I am only 49 and was the school teacher for 20 years and had to give that all up I now take 10mg twice a day they are called physeptone i could not even get out of bed my back was that bad and i tried everything but this works for me it lasts a long tine in your system and its a different form of methadone i dont like to write it on just any post because of the stigma ive been on it now for 1-2 years my GP is ok with me taking it after getting permission from my rheumatologist every one is different and yes it is addictive but i never go higher in my dose and it does not make me feel drowsy my husband said he can finally see bits of the old me iI used to wake up in the night crying in pain because of my back pain i still get some pain in different spots and have acupuncture done 1-2 times a week if it works for me then so be it i know its bot the perfect drug to be taken but the alternative is just not worth it

    take care this is my story sending you and your husband lots of love and hope you find something that works for you and i also just got a referal to see a specalist run by the govermebt to try medical marijuana in capsule form if that works ill stop taking it my doctor will ween me of it take care thinking of you hope i have helped in some way its not everyones way but it works for me ❤

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