I have a diagnosis!!!!!!!!!

I have been to the rheumatologist this morning and walked away with a diagnosis, drug management plan, referral to physio for a walking aid and referal for a low impact exercise group!!!!

I am so so happy although a little bitter sweet. I am not overwhelmed with the fact I have fibromyalgia, a chronic pain disorder 😞 but am very happy that after 21 years of being in pain and fighting with the medical professionals I walked into an office this morning knowing that there was something more to my illnesses/symptoms and walked out impowered and with the knowledge that I AM ILL....ITS NOT IN MY HEAD!!!

So I guess now the real battle starts? I have fought for so long just trying to be heard and understood and not be thought as "a hypochondriac mad woman!" That now I have to focus on how do I deal with this?

So please all you others that suffer with this debilitating illness can you tell me some of your coping strategies? What helps you? Do you take regular exercise which has been suggested I do? Any medication you couldn't cope without? And any complimentary therapies I should look into? Are they available on the Nhs? And if not approximate costs of these? ...........AND THEN THE DREADED PIP APPLICATION!!! I applied late last year as my symptoms effect my daily living... Got 0 points... Couldn't prove I had an illness that would effect me as it was not diagnosed till today! Went to reconsideration also got 0 points...... The big question is should I reapply now I have concrete proof I have an illness that can be attributed to the daily difficulties I face???

Lots of questions I am sorry but any help for this 21 years of suffering newly diagnosised lady would be greatly appreciated xx

10 Replies

  • So pleased for you - what a long battle you have had! Personally I like dr myhills's information for CFS/ me sufferers. I couldn't do without amitryptiline - I am very lucky that a low dose helps me to sleep. I also take a lot of supplements that help. I take a high dose of vit. C, good quality multi vit, co-enzyme q-10, good quality omega 3, Dryhills multi mineral mix and a good quality probiotic for gut health.

    The things I have found essential have been:

    1. Sort out sleep (even young healthy people start to experience fibro symptoms when sleep is poor)

    2. Sort any gut issues - many with fibro/CFS have IBS or leaky gut (some research suggests fibro may start in the gut) I myself had IBS for a long time before fibro diagnosis

    3. Look in to any candida issues

    4. Try boosting adrenals - no gp will believe your adrenals can be weak so you will have to research this). My saliva cortisol came back very low but I sorted it.

    5. Along with this I find a low sugar, gluten and dairy free diet really helps too - probably helps the gut issues.

    Hope this helps - different things work for different people. Best of luck with finding something that suits you.

  • Yes I really think you should reapply for PIP as you now have concrete medical evidence that you have a specific condition. You have nothing to lose and everything to gain.

    Hydrothereapy is an excellent on and the only exercise that I felt was really helping me. In our area it is limited to 6 sessions but that should be enough to learn the exercises and quite a few of the newer Leisure Centres run by councils have a hydrotherapy pool. I was referred by the NHS physio. and really enjoyed the sessions even though they were hard work initially. Some people find that going to an expert physio who is aware of your condition can point you in the direction of low impact exercises that can keep you supple but not put your joints or muscles under too much strain. I also had acupuncture with needles but unfortunately that did not work but that does not mean it would not work for you. I do have electro acupuncture through the Pain Clinic every 4 months and that has certainly helped some of my spinal pain.

    Many have found that a Tens machine works for them also.

    Do have a look at the mother site FibroAction as it has good tips on exercise, medication, etc. Good luck in your search.x

  • Thank you to both of you for your replies, I really appreciate it.

    My medication will be 10mg of amitriptaline as 25mg leaves me with a nasty medication hangover in the morning!! Although for the 4 months I was on this is saw no improvement in my pain it did help me gently to sleep. The consultant also wants me to take an antidepressant although not sure which one till the GP prescribes it!! She also said that could continue to take my tramodol as pain relief.

    Once I recieve my referal to the physio department for my walking aid I am hoping that I will be able to bring up the subject of hydrotherapy etc and learn what maybe available for myself to help make the symptoms easier to manage.

    I also have some medication to try and relieve the spasms in my bowel that is caused by IBS so fingers crossed that works!!

    I of course also have the referal for the exercise group so I am hoping that may help..... I was a little surprised the consultant suggested that as your first instinct when you are in so much pain is to withdraw from physical activity!! But I will give anything a go 😊

    I will start to research about supplements and also the other websites that have been suggested.......also just a thought as I write this....some patients are able to get gym/swimming memberships in my area or were able to! To aid weight loss....I wonder as it is a chronic condition if the same opportunity would be available to ourselves?

    And with regard with the PIP application....... I have asked for a copy of my letter from the consultant to the GP to be sent to myself, once I have got this in my hand then I will reapply. It nearly broke me mentally a couple of months ago as I felt like I was being called a fraud! But now I have the medication plan, referrals and diagnosis I feel it justified I can reapply with my head held high!!

    Thank you once again ❤️ I hope you have a low pain day xx

  • So glad you got your diagnosis, can't advise really as I'm still waiting for my own diagnosis but my GP has hinted it's 'probably' fibro (also she has also said rheumatoid arthritis) but in my experience when I've mentioned to people that it's probably fibro they've been supportive. I think the view that fibro is 'made-up disease' is changing. Good luck with your PIP application, I hope you're successful.

  • I am really pleased for you. the rheumatologist sounds excellent, wishing you well on your journey with fibro, this site will also help you x

  • Congrats on the diagnosis (I think)

    All I can add is that the pip application is for what support you need not how I'll you are. I have been granted pip at the advanced rate for both components for 3 years, so it is achievable with fibromyalgia!

    Good luck with treatments and the PIP claim.



  • Thank you again!! 😃

    It is so lovely to have such kind supportive words from others that understand.... I have a wonderfully supportive family but at times still wonder if they fully grasp what I am feeling inside as externally we all look quite well... Of course when I'm hanging off my hubby's arm dragging my legs behind me I am not looking that great!!! It is a hard journey for everyone involved but this diagnosis means a great deal to my sanity. Now I have medical backing and clarification of my illness I hope that some avenues of extra support may be available to help me.

    I hope that the PIP application goes well as I have the same problems now as then BUT they made me feel like a fake because I couldn't prove why I suffered the way I did via a consultant!!

    Thanks once again for taking the time to comment it means the world ❤️ Have a good day 😘x

  • 21 years is ridiculously long. It took 6 years for me, and I found it excruciatingly long. Also doctors thought that I had something, they did not really care as they knew I was not going to die from it. Having finally the diagnose was a relief for me.

    There are a lot of things to do to try to get better, exercise, eat healthy food, relaxation, meditation,... and also medication.

    Amitrityline worked strait away on my muscle pain (although they are still hurting but the level of pain is more manageable). However, my tendons and ligaments are still inflamed but it is improving slowly.

    Good luck!

  • Things I found helpful are:

    5HTP - helps me sleep, I only take it occasionally but found it better than Amitriptyline.

    MSM - has helped joints, pain, swelling and mood

    The pain clinic is educational and very useful to understand the whole mind/ body interaction.

    Alexander T. was great but it's expensive and teaching variable.

    Walking, fresh air and nature - priceless to me.

    Mindfulness meditation

    Eating only fresh home made food and avoiding gluten

    Kefir and natural yoghurt

    Well done on the diagnosis, but I would now avoid the DWP and ancillary agencies. I found they severely compromised my health. I would rather starve in peace than have anything to do with them. The system keeps you ill.

  • I'm so glad you finally got a diagnosis. I'm in the same position as you were. 20+years of battling for answers only to be fobbed off time and time again. I had my bloods checked last week for vitamin D deficiency and inflammation flags but they came back normal. I now have the doctor again on Wednesday and I'm going to insist on a referral to rheumatology. All I want is confirmation of the fact that there is something wrong, and perhaps help with how to cope better with the fatigue and pain. Is that too much to ask? I'm quite concerned though because I'm struggling with work but can't afford to stop working or go to college to retrain.

    I hope everything goes well for you upoupo ☺

You may also like...