I don't want a Label! I want a Diagnosis

Posted , 15 users are following.

Hi, I have had some major personal stress over the last Year and a half. And then started getting the following Symptoms - Stiffness, Fatigue, mild headaches and Jaw ache, IBS, anxiety, Widespread pain all over my body (Neck, Arms, shoulders, elbows, back, hips, Kness and so on) The way i discribe my pain is - imagine you are at the Gym, and pick up some weights that are way to heavy, and then Hold them out either side of you, that burning sensation and the ache! That's how i feel everyday. I have been to Physio, I have been to Pain Management sessions and also Accupunture. I was put on Codine, then Co-dydromal, then Nortriptyline as none of these worked i have now been put on 20mg Citalopram. I have had blood test's for Full blood count, Anti-Nuclear Antibodies, Creatine Kinase, C Reactive Protine, Rheumatoid Factor, Thyroid Function and Vitamin D along with many others. All Came back Satisfactory! Last Night i spoke to my doctor and due to the fact that i am fed up and want to get on with my life i had a stern word and asked What Next, I've done all of the above and still havent had a Diagnosis, the doector asked me what i want her to do, Last time we spoke she mentioned a refferal to Rheumatology, so i asked about that, she then proceeded to ask me what i want to get out of the refferal.... I advised her that i want offically know what is wrong with me, it's no good telling my husband or my Boss that the doctors "Think" i have Fibromyalgia. and if she wasn't the person to give me a Diagnosis then i want to see sombody that can..... She has no agreed to referr me, so hopefully i will get a official Diagnosis not just a Label... Anybody else find they lack support from there GP for Cronic Pain/Fibro/Fatigue???

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  • Posted

    After 3 years of going backwards and forwards to the gp I finally found a doctor that understood.... The others put my symptoms down to depression as I've had some deaths in the family in close succession. 

    Keep persevering with your drs you will find one that helps.

    Your symptoms sound very similar to mine and my gp diagnosed straight away

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  • Posted

    It is so frustrating, isn't it?  I have had an 'official' fibromyalgia diagnosis from my GP, and I describle my pain exactly as you do - it's very much 'heaviness' combined with very weak joints. Unfortunately the whole area of fibromyalgia / ME / CFS / PVFS etc etc seems to be a very vague one still for most of the medical world, and I'm personally convinced that there are all sorts of different conditions that are labelled (as you rightly put it!) 'fibromylagia' because they share similar symptoms.  That said, fibromylagia (unlike the others in that list) CAN be officially diagnosed - you have to have a certain number of 'tender points' (I think possibly 11 out of 18?) and then they diagnose fibromyalgia.  If you haven't been told about these, then do google them!

    I'm afraid it does all seem to be a bit of a grey area, in terms of managing the illness as well.  For example the literature tells us to keep exercising whatever happens as it will help things, but over ten years of living with this I have discovered that when my body needs to stop, it needs to stop, and continuing to exercise will seriously prolong recovery from a flare-up. You will work out what works for your body as you go along, and I do hope it happens soon for you.  Rheumatology is definitely the right place for a diagnosis - and will probably give you the best advice for managing it (though as I said, what works for you...) so definitely keep chasing up that referral.

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  • Posted

    Hi there, your symptoms sound very similar to mine and your description of the burning pain is a good way to describe it. Well done for standing firm, I have been like this 4 1/2 years and was diagnosed with Fibromyalgia only a fortnight ago, so still learning myself. A Reumatologist diagnosed me after years of being dismissed and seeing doctor after doctor,  normal test results etc and I completely understand your frustration. It can take a while but it sounds like you're getting somewhere now, the referral is good news. I hope you get the answers you need and the treatment for your symptoms. Best wishes.
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  • Posted

    I have had many issue's with the GP's but I do think (now) that they have had a word in their ear about the amount of referrals they have been making and the need to save NHS money.

    I think you have probably been down the same road as most of us as it has taken me 12 months to get to see the pain clinic at Walton hospital to get a diagnosis. I am frustrated and angry because in my case they have done little else to find the root cause except telling me that the thing that set it all off should not be causing this amount of pain.

    it has taken a further two months for a Dr to suggest a rheumatologist and I now await the chance to see this specialist.

    There are people on here that will give you good sound advice on what to do or ask for so I do think your in the right place.

    Best of luck

     

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  • Posted

    check out this website F/M is F/M thats it thats your diagnosis.

    ukfibromyalgia.com, this is a very good site where you will get answers.

    best wishes james

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  • Posted

    Thank you everybody for your comments, Much Appreciated.
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  • Posted

    I sure hope you get some answers soon! I feel your frustration because now my pain specialist wants to rule out my spinal stenosis in my neck and my fibromyalgia. This is been going on for over 4 years. As you and I both know every Dr has a different diagnosis and opinions. I hope you get some where. Keep us informed please. Prayers!
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  • Posted

    An emotional trauma pushed my body into FM in 1999 and I had been for years earlier working on what I believed was a sluggish thyroid and could not get fixed by the MD I was seeing....starting back in 1991....finally got it fixed in 2002, but the FM hit me a few yrs earlier....

    Thinking about this, do kinda believe if my thyroid was in better shape the FM wouldn't have been so horrible....

    TOO TOO MANY doctors don't get the thyroid right and there is such a huge connection.   stop the thyroid madness is a great book on the thyroid mess...

    I deal with OA as well and all is worse since the trauma of a hip replacement in 2010......and I'm aging......J

    I take tons of supps to keep my health up and grape seed extract is a salvation...

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  • Posted

    Hello MrsShipo,

    Sorry to hear your story, although it is very familiar to most people on this site it seems. Why do Doctors do that? Ask us what we want to get out of our appt, referral etc! Luckily my Doctor seems interested in this condition, and doesn't just throw painkillers at me. From what I have read on here painkillers don't always work that well and have nasty side effects. So good luck with your diagnosis and keep looking for a more understanding Doc. Failing that, see if your Doc is open to gaining info from you -I have come across some people who do this!

    Take care, Anne

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  • Posted

    Hi there.

        I am so with you on the way gps etc treat us. It feels like I'm just being given this pill, that pill. It took almost 4 years to finally be referred to a Rheumatologist who diagnosed Fibromyalgia. I suppose it helps finally knowing what is wrong but that's where it stops. I'm still in agony everyday, no sleep, depression, the list is endless. Twice I've been at my lowest ever when the pain has been so unbearable that I was so close to overdosing so I wouldn't feel anything anymore. I'm going back to see my gp next week and am going to be tough with her cause I've had just about enough. I hope you get the answers you need also Hun. X

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  • Posted

    Hi all,

             symptoms of F/M  

    Pain - Fibromyalgia pain has no boundaries- Fatigue - This symptom can be one of the most incapacitating for people with fibromyalgia.-- Memory and Concentration - Difficulty concentrating and retaining new information-- Sleep Disorders - Patients report trouble falling asleep and more importantly staying asleep-- Exercise Difficulties - Moderate intensity exercise activates a powerful pain-relieving system in healthy people, but it makes the pain of fibromyalgia worse.-- Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain and bloating-- Chronic Headaches - Recurrent migraine or tension headaches are experienced by 50 to 70 percent of fibromyalgia patients-- Jaw Pain - Temporomandibular joint dysfunction causes tremendous jaw-related face and head pain--

    Other Common Symptoms - Non-cardiac chest pain, acid reflux, irregular heart beat or palpitations, shortness of breath, numbness and tingling sensations, the feeling of swollen extremities, chemical sensitivities, nasal congestion, premenstrual syndrome and painful periods, irritable bladder, interstitial cystitis, vulvodynia (vulvar pain), difficulty focusing eyes, dry or burning eyes and mouth, dizziness or feeling faint, profuse sweating, muscle weakness and balance issues can occur.24,25,26 Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, some foods, and often the medications that they are prescribed.27.

    Aggravating Factors - Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety, and over-exertion can all contribute to fibromyalgia symptom flare-ups.

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  • Posted

    This is a guidline for treatment talk to your GP.

    Treatment

    The goal of treatment is to relieve or control the symptoms. Talk with your doctor about the best treatment plan for you. Options include:

    Therapy Programs

    Physical therapy

    Heated pool treatments

    Alternative treatments, such as massage, acupuncture, relaxation training, trigger point therapy, biofeedback, andyoga

    Cognitive behavioral therapy (CBT)

    Lifestyle Changes

    Your doctor may also recommend that you make lifestyle changes, such as:

    Eating a healthy diet

    Learning to cope with physical and mental stress

    Maintaining a regular sleep schedule

    Participating in a regular exercise program that includes aerobic activity, strength training, and flexibility exercises. Gentle exercises that may not strain painful areas include walking, biking, and swimming. Talk to your doctor to make sure it is safe for you to start exercising.

    Medications

    Your doctor may recommend the following to help manage symptoms:

    Antidepressants

    Anticonvulsants

    Sedatives

    Muscle relaxants

    Nonsteroidal anti-inflammatory drugs (NSAIDs)

    Opioids

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    • Posted

      I manage the FM with all alternative supplements, NO PHarma drugs....

      Fibro is not new, just new name....as I understand things, back in my grandma and mom's days, it was rheumatism...they didn't do all the pharma drugs back then and foods were CLEANER too.....there were processed foods, but today, good grief...

      Then along the years, it was changed to fibroitis, then got the name fibromyalgia and the parade of pharma drugs.

      No opioids for FM....magnesium for sure, b vitamins for calming nerves, meditation works wonders.....  I could go on and on, i've been dealing with this stuff since 1999 and no stronger drugs than ibuprofen...

      Thryoid support is critical and Vit D more than critical.     J

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    • Posted

      Hi Joy,

                 Thanks for your in-put, i have tried all the supplements under the sun nothing worked including vitamin-d, magnesium and calcium, i have also tried many self help programs and most are just rubbish really. I do practise meditation/self hypnosis everyday and this definately helps with having the confidence to use pharmas as least as possible but i have to face that tramadol and paracetomel are the only drugs that work for me in which i control myself and not as GP recommends. I have even became a vegetarian in the past 6yrs. But i can only do what i can afford and alternates become very expensive after a while, so to manage F/M by using alternates is not realistic for some of us. The post i made earlier is only a guidline for those that do not understand F/M yet and was taken from a reputable website. I do understand what pharmas do to our bodies but hey what else is there that doesn't cost an arm and leg to get and this is from someone who has been stung many times trying alternate therapys with half made promises. For me that is how it is but everybody is different and copes in different ways.

      best wishes James

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    • Posted

      I'll bet you've never taken grapeseed extract or pycnogenol, powerful antioxidants....I've been on them alternatively for 19 yrs....  Dealing with fibro about 15 yrs.  aka rheumatism.

      Minerals are vital and just needed for all health......the uk'ers just don't buy into the supplement world in general..maybe it's due to your govt run health insurance....everything if FREE....that's not how it is here.. 

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    • Posted

      thanks Joy i will give that a try, i use eyebright just now and that seems to be helping a little, in the end fibro will always be there we just have to try and make it easier to cope with.

      best wishes James

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